Newly diagnosed

[Holly]

Hi everyone. I have just been diagnosed this week with MC (though he called it collagenous colitis) after being unwell for about 6 months and having what I always thought was IBS since I was 16 or so. I'm 34 now. I'm really happy to have found somewhere to talk about this with people who can empathise, particularly since my specialist seems clueless and my friends and family are sick of hearing about it! So I'll give as brief a history as I can and would love any thoughts, tips, advice etc.

When I was 16 or so I started getting sharp pains in my lower abdomen and went to the doctor. He asked about bowel habits etc (which even then were weird) and diagnosed me with IBS, told me to make lifestyle changes and that was it.

In the years since then, it's been really up and down. I can be fine for months on end then be quite ill for days, weeks or months. The usual factors such as diet, stress, alcohol etc have a big effect. I have tried to eliminate gluten and dairy from my diet with limited success as I just don't have the willpower!

Late last year I got really quite unwell though then the symptoms were primarily in my stomach. I vomited a lot, had constant nausea, loss of appetite etc. I was also constipated quite a lot.

Long story short I've had, in this order

* h.pylori diagnosed by stool test and treated with triple drug therapy
* endoscopy - negative
* ultrasound - also negative
* h.pylori still present, treated again with triple drug therapy. now confirmed as gone.
* colonoscopy which showed MC

My specialist advised me this week to try Loperamide to control the diarrhoea which has been really quite debilitating over the past few weeks. Weirdly, I've been quite prone to constipation in the past few years but since the last triple drug therapy about 2 months ago, have had diarrhoea every day.

To be honest, the diarrhoea wasn't even the worst thing, I'm used to it and have never had any accidents. It was the cramps that were really killing me. At points, I was waking up every night at 4 or 5am in agony which was eventually relieved by opening my bowels. Not what you need when you work full time and have 2 jobs! One time I was in so much pain and had such a bad attack, that on the way back from the toilet to my bed, I must have fallen or fainted and knocked myself out. I woke up on the floor with a very sore head and had 2 black eyes for a fortnight afterwards!

Anyway, the cramps are much better now thanks to my taking Mebeverine, Buscopan and Colpermin (all antispasmodics) every day. I've been cutting those down recently with success. I'm tired of taking 15 + tablets a day. But it still hurts when I need to poo and I have to go pretty much as soon as I have the urge.

I also have really bad heartburn / indigestion / reflux so take Lansoprazole daily. I had to do without for 2 weeks for the h.pylori breath test and make do with Ranitidine which was really tough.

I also have permanent allergies and take prescription antihistamines every day all year round otherwise I sneeze upwards of 30 times a day and my nose runs permanently. This is worse in summer but present in winter too. I've sneezed a lot ever since I can remember.

Naturally I've lost a lot of weight as food doesn't stay in my body for longer than a few hours and because I still have very little appetite. I've been making a conscious effort to eat 3 square meals a day but it's not easy when you just don't feel like it. It's sad really because I've always loved food and this has really taken all the joy out of eating for me. A couple of people have commented recently that I've lost too much weight now and though it was good to see my spare tyre go (!), I have lost a lot of muscle mass which is annoying because I love running and keep fit generally which is really hard now. My energy levels still aren't right either. I've been slowly returning to exercise and other activities but progress has been slow and I still don't feel like my old self.

So he gave me the diagnosis this week and advised me to take Loperamide (anti diarrhoea) to treat the symptoms. He said to try 1-2 a day and see how I get on and go back to see him in 6 weeks. I've always been very wary of taking drugs like that and also of laxatives believing that they unbalance your system. Certainly I was pretty unwell after the clear out I had to have for the colonoscopy and wont' be doing that again in a hurry! So in the past I've only ever taken Codeine to slow my bowels down a bit when I've absolutely needed to because I was going out or because if I did one more poo in a day I would cry!

So I took one Loperamide yesterday and I have to say things are better than they have been for a long time. It's 2pm and I've only been for a poo twice today! The pain was less and though I think I'm still a way away from normal bowel motions, it was a huge improvement. I'm going to experiment with the dosage, maybe taking 1 every other day. I hate being constipated more than anything else so don't want to go the other way.

I think there are a few reasons that I've had such a bad flare recently.

* Lots of stress over a long period of time, including a bereavement. These factors are all resolved now.

* Overuse of nsaids. As I said, I'm a runner so I'm always injured and used these a lot last year for that. I just use topical cream now when I have an injury. BUT I have very very very bad period pains and have to use nsaids then. Having played around with medicaiton for a while now, I've settled on Mefanemic Acid + Co-codamol which allows me to function, sleep, work etc. I think being on my period affects my bowels anyway and obviously all the painkillers don't help.

* h.pylori

* too much alcohol, gluten, dairy etc etc. I don't drink a lot, just socially but I know it doesn't help.

* i started smoking again. I know how bad this is and nothing you can say can make me feel any worse about it than i already do!

So there you go. There's my story. Sorry it's such a long one but it's good to finally get things off my chest after so long.

i'm worried about having to Loperamide forever but maybe this isn't rational. I have no issues taking antihistamines and antispasmodics for life so why should this be different?

Clearly I will avoid steroids like the plague unless I have another acute flare. I'm already at high risk of osteoperosis, don't want to make that worse.

I'm hoping that now I know what's wrong with me finally, any future flares will be better controlled.

I know everyone on this board is a huge fan of eliminating gluten from your diet but I know this isn't realistic for me so I'm not going to pretend it is. Dairy is easier as I don't like milk or cheese (!) but I'd still struggle to cut it out all together. Which maybe means I don't have the right to complain but I don't think there's any point in not being realistic. I spent so long last year and this living off chicken soup, toast and honey that I became really resentful of my diet being so restricted.

So there you go, that's me! Any thoughts, hints or tips gratefully received. I've been thinking about seeking some alternative therapies like acupuncture and/or CBT. What do we think of that?

Holly x

[coryhub]

Welcome Holly,
The good thing is you have a diagnosis, the bad thing is Colitis is it.
I too used to have gut aches at 4 or 5am, and many of us have a prior history of constipation before the frequent movements of CC began. You may not have an allergy to gluten. The way to find out for sure is to send off to Enterolabs for the test kit. Have the three biggest culprits checked: gluten, dairy and soy.

https://www.enterolab.com/

[maestraz]

Wow, Holly, you have really had a bad stretch! Sorry for that, but glad you found this group. It sounds like you've been doing some looking around on the message board previously, but am glad you decided to post. I know others will be replying to you very soon, with good advice.

Since you had a recent course of anti-biotics, you might want to take some pro-biotic supplements to try to restore some good bacteria to your gut.

I will tell you that my GI doc told me no NSAIDS right at the start--it was right there in her GI diagnostic manual's description for MC, which she gave me a copy of.

As you will hear from many, Entocort/budesonide is the med that most helps with MC, and many of us have taken it. It is a steroid, but targets the gut more directly. Maybe discuss that with your doctor?
You will get your life back! My experience over the last year is that managing MC requires a patient, systematic approach, which is often frustrating when you aren't feeling well and MC is negatively impacting your life in all sorts of ways. I wanted instant improvement, but that's not how CC/LC goes, unfortunately. I felt very angry at the beginning that the condition was going to require me to change my diet (On doctor's orders; gluten immediately and dairy shortly after). But things improved as we eliminated most other meds down to the bare minimum, started the Entocort, and made the dietary changes.

Each of us here seems to have his/her unique experience in terms of how to manage MC. I hope you begin to find some relief very soon!

[Zizzle]

Welcome Holly! I too was diagnosed in my mid-30's after 10+ years of "IBS." I was an international development brat, so I had a hefty share of GI infections growing up. Antibiotics for an infection may have been the final trigger of my gluten intolerance and MC. My doctor offered Asacol, which I declined. It doesn't seem to help many here, and I wasn't about to lose anymore hair! I tried the 8x day Pepto Bismol regimen with minimal results. I guess my case wasn't severe enough to offer Entocort right away, but that is truly the drug of choice. It wasn't until I got Enterolab testing and realized I was sensitive to Gluten, Dairy and Soy, that I finally started getting better. I was 70% improved within days and I had my life back, but it took 2 years to see my first solid poop ("norman").

Since you had GI issues since you were a teen, I would suspect gluten intolerance and celiac genetics (even though you had a normal endoscopy). Do you have any family history of celiac or related autoimmune diseases (Thyroiditis, Type 1 diabetes, autoimmune liver diseases, vitiligo)? I have no family history, but I now have undifferentiated autoimmunity because of the inflammation in my gut. If you don't heal what's going on in your gut with diet, you may eventually get additional autoimmune diseases (many people here do). You can take meds to supress some of the symptoms, but you will never be fully well, and additional problems may ensue, if you don't consider dietary intervention.

Incidentally, NSAIDS are not the only meds that can cause or aggravate MC. PPIs used for heartburn and reflux can cause drug-induced MC as well. Of course the treatment for H.Pylori wiped out all your good bacteria, so that's a major contributor too.

I strangely remember smoking being an inhibitor of autoimmunity, so who knows if you'd be worse without the habit!

Anyway, welcome. I hope we can support you in whatever you decide to do.

[tex]

Hi Holly,

Welcome to the board. Your story is similar to many others here, and your doctors seem rather challenged by your case, which most of us here have also found to be typical for anyone with CC.

My first question is, "Have you recently been tested for celiac disease?" If not, you should be, because you show most of the markers, (early-onset osteoporosis is an especially strong indicator of celiac disease).

And, as Zizzle pointed out, the proton pump inhibitor (lansoprazole) that you are taking is well known for triggering CC symptoms, and for causing osteoporosis/fragile bones.

Since you were candid in explaining your situation, (and your reluctance to change your diet), I will list your options for treatment, (from a realistic perspective), in order of preference, based on safety, and best outcome to general long-term health.

1. Change your diet to totally eliminate your food sensitivities -- just eliminating one or two of your problem foods, or cutting down on them will provide no significant benefits, because it takes a long time for the gut to heal from gluten damage, especially, and most of us here are extremely sensitive to gluten and casein, and about half of us are sensitive to soy, and some are sensitive to other proteins.

2. Take Entocort EC, and regulate the dose down to a level where it does not cause constipation (C).

3. Take one of the mesalamine-based drugs such as Asacol, Lialda, Colozal, Pentasa, etc.

4. Use an immune system suppressant, such as Imuran (azathiaprine), but be aware that this significantly lowers your resistance to infections and disease.

5. Do nothing, just live with the symptoms. Please be aware that if you are sensitive to gluten, and you continue to ingest it, your osteoporosis will continue to progress, despite any other efforts that you may make to try to prevent the loss of bone density. Drugs such as bisphosphonate will fool the bone density testing to make the results appear to be better, but they also prevent the growth of new bone tissue, so that in the long run, the bone embrittlement problem becomes worse, not better. At your relatively young age, your bone health is in serious jeopardy in the long run, if you are sensitive to gluten, and you continue to ingest it. Your problem is vastly different from someone who is in their 70's or 80's when the osteoporosis begins to develop.

Please be aware that constipation is a symptom of CC just as surely as watery diarrhea (WD) is, even though most GI specialists are unaware of the association. Many of us, (including myself), have or had alternating D and C.

The food sensitivities are the source of the inflammation that causes both the clinical and laboratory symptoms associated with CC. The drugs commonly used to treat the disease will suppress the inflammation, and may control the symptoms, but as long as foods that trigger immune system reactions are ingested, new inflammation will continue to be generated. The longer we consume foods to which we are sensitive, the more so-called autoimmune diseases we will develop, and the faster our general health will deteriorate.

I apologize, because I realize that this is not what you wanted to see, but trust me, you are not the first to have trouble changing your diet -- that's a very common problem here. No one wants to change their diet, and especially stop eating their favorite foods, if they can possibly avoid it. Some members in that situation have found that a combination of partial diet changes, in combination with a maintenance dose of Entocort or one of the mesalamine-based drugs, for example, will provide them with a satisfactory level of control, so that they can get their life back without following a rigorous diet.

It's possible that loperamide can be used to regulate your symptoms, but please be aware that it does nothing to suppress the inflammation, so the intestinal damage will continue. If you choose to go that route, please be sure to either take a vitamin B-12 supplement, (along with other B vitamins), and vitamin D is very important. Inflammatory bowel diseases tends to cause malabsorption problems that eventually lead to a deficiency of those vitamins. We also tend to become deficient in magnesium.

Please don't feel too badly about smoking. True, it increases certain other health risks, but research shows that nicotine is actually protective of UC, and it is well known that stopping a long-term smoking habit has caused many a case of CC/LC/MC. Unfortunately, resuming smoking will not reverse the process, once the genes are triggered, but I can assure that stress plays a huge role in this disease, so anything that will help to relieve stress is beneficial. If you want to try to stop smoking later, it's best to try to do that after you have your CC symptoms well under control and you are in stable remission.

One other thought -- because of your allergy symptoms, you almost certainly have intestinal mast cell involvement with your CC. That means that avoiding foods high in histamines, or foods that trigger the release of histamines in intestinal mast cells, may be triggering your symptoms. You might try cutting those foods out of your diet, to see if it reduces or eliminates your GI symptoms, and/or your classic allergy symptoms. Don't expect your doctors to know anything about this connection, though, because they aren't trained to understand it. The site at the following link lists some foods that you may want to eliminate from your diet (at least on a trial basis).

http://www.michiganallergy.com/food_and_histamine.shtml

Again, welcome to the board. We are all different, so each one of us has to work out our own optimal treatment program that fits our needs, and our lifestyle. Regardless of how you choose to treat your symptoms, we will try to help you in any way we can, so please never hesitate to ask questions.

Tex

[Leah]

Hi Holly. Welcome to our family. I was dx this February. Was in "gluten denial" for a month, but took out dairy right away. I totally understand you not wanting to change your diet, but if you don't you will continue to damage your gut and like Zizzle said, you could end up with more autoimmune diseases down the road. MC is my third :(

I started on Entocort a month into this whole thing and it started working immediately. That's when I decided to HEAL and not just try to cover the symptoms. Gluten had to go. It was a hard thing to do and took a lot of time reading labels and finding new ways to eat, but once you find these new foods, they just become what you buy and eat on a regular basis. Most of us also can not eat raw fruits and veggies..... at least until you heal. Everyone reacts to different foods, but until you take out the inflammatory culprits ( gluten, dairy, soy), it's hard to tell what else you are reacting to.

Four months into this, I now am down from three pills to one ( which is a very low, pretty safe dose) and am just starting to "test" some of the foods I have given up ( popcorn, beans, fruit, salad, tomato sauce...etc).

Everyone here is different, but all of us had to change our diets to feel better :(

Also, know that after eliminating the big three, it takes time to feel the difference. If nothing else, this disease takes PATIENCE.

Keep us posted. Ask anything.

Leah

[Zizzle]

Holly,
I second Tex's question about celiac testing. I assumed because you had an endoscopy, that they were looking for celiac, but it occured to me they may not have taken biopsies. Did they? Did you have celiac bloodwork (antibodies and gene testing)?

[tex]

Another thing to consider with the classic celiac tests is that a positive test is extremely reliable, but the sensitivity of the tests is so low that a negative test definitely does not rule out celiac disease. For the blood test result to be positive, for example, the damage to the villi of the small intestine must be at a very serious level (Marsh 3 or higher). For many people, it can take many years for the damage to reach that level. At lower intestinal damage levels, the blood test result will virtually always be negative.

Tex

[brandy]

Hi Holly,

I just wanted to say welcome! Brandy

[Bifcus16]

In my part of the world they are running an advertising campaign encouraging people to 'have another go at giving up smoking'. Research found that most people had to 'give up' multiple times before they could stay smoke-free.

Gluten can be the same. It does have chemically addictive aspects, and it is a social drug, as is nicotine. Just because you have tried to give up gluten and fallen off the wagon before, doesn't mean that you can never do so. Just like smoking, some people need to 'give up' multiple times before they can remain gluten-free.

The other hard bit about giving up gluten is that when people have additional issues, such as soy and dairy, just giving up gluten isn't enough to make them feel better.

I find that consuming gluten makes little difference to my gut, but dairy will give me the runs. What gluten will do is make me feel cr#p. Sore, stiff muscles, swollen fingers and joints, tripping over and dropping things, fuzzy head, poor decision making, asthmatic wheezing, tiredness. So I go gluten and dairy free and life is better. Soy doesn't seem to affect me.

I wouldn't advocate trying to give up smoking at the same time, but giving up gluten, dairy and soy and seeing how you feel might be worth having another go at.

Lyn

[Holly]

Hi guys, thanks so much for all the replies. It's great to have a support network finally.

And I know you'll all appreciate this news, I did a normal poo yesterday!!! And another one today! They were awesome. Just normal and didn't hurt at all. I'd say it's been probably 4-5 months since I had a poo like that, it was amazing! So far all I've taken is 1 Loperamide 2 days ago but things still seem to be ok so I'm not going to take another one unless / until I get diarrhoea again. And I've been farting again. I hadn't realised but farting has been almost entirely absent from my life for the past few months but it's made a welcome return this week! I've actually always been known for my frequent farting, particularly as I'm not shy and will just fart in front of people so it's good to have that aspect of myself back again!

Re probiotics, is it possible to get them NOT in yoghurts or milk based drinks? I did try some during and after both courses of antibiotics but think the dairy part of them made thing worse. Though it's hard to tell as there are always so many variables. My colleague (who is a GP) printed an article out for me today about this;

"studies have demonstrated that probiotics can alter GI Transit, reduce visceral hypersensitivity and/or reduce colonic inflammation. These properties are often (although not always) unique. for example, bifidobacterium infantis 35624 (marketed as Align and currently only availabe in US) has been shown to ameliorate altererd inflammatory cytokine profiles in patients with IBS and has subsequently been shown to significantly improve global IBS symptoms scores in a double blind randomised placebo controlled trial..."

So yes to probiotics, how can I get them without eating dairy?

So will taking nsaids once a month for period pains do me more damage? Though truthfully I don't see that I have much choice because the only other option is strong opiates like Tramadol which makes my skin itch and which I obviously can't take and come to work anyway. I run my own business and work as a counsellor so having time off with period pains isn't an option! But if I don't control the pain, I can't come to work either.

Zizzle, I had a bad case of d&v just before this flare started which was attributed to a stomach bug that was going round so that might have been a factor too. I have also travelled a fair bit to India, Thailand, Australia etc and spent time camping out, eating weird stuff, not washing for days on end and what have you so I wouldn't be surprised if I'd introduced bad stuff into my system that way too. I've also never been particuarly fussy about sell by dates and stuff like that.

I have had the blood test for Coeliac 3 or 4 times I think. There's no family history of Coeliac or any of the conditions you mentioned Zizzle. My dad was hospitalised with diverticulitis once and he says his mum always had problems with digestion but it's unclear what as he grew up on a farm in the middle of the Portuguese countryside so healthcare was pretty minimal. We think she died of gallstones in the end but aren't too sure. My mum's fit as a fiddle and her mum lived to be like 95 so at least half my genes are ok!

So should I stop taking PPIs then? I can cope with just Ranitidine if I have to but it's not easy. I wasn't aware of the link between PPIs and osteoperosis. I love the way doctors say "yes it's fine, you can take that medication forever with no side effects" then you find out they're lying. Of course I know all medications have side effects but still... it's like when he said I'd be fine after the endoscopy (I threw up twice that night and felt like sh1t) and after the colonoscopy (was in agony for 2 days and felt like sh1t). I wish they'd just be honest with us! But yes if it makes my condition worse, then I need to stop.

It's not that I'm reluctant to change my diet, it's that I know I can't do it. I don't have any willpower at all when it comes to food. I've always been slim so have never had to diet or be too picky about what I eat. Luckily I mostly like foods that are healthy anyway and certainly in recent years I've become increasingly averse to eating rubbish, especially fatty and processed foods. Which I suppose was my body cleverly trying to regulate the amount of rubbish I put into it. So I know for a fact that any attempt to totally eliminate gluten from my diet is destined to failure. And honestly unless you told me I would die if I ate another gram of gluten, I just can't see myself doing it. It would be so hard and such a restrictive diet, that it would totally dominate and define my life, even more than having to go the toilet all the time. Which makes me feel like it wouldn't be worth it. But you're saying that I'm at risk of other autoimmune diseases if I don't right? Like what kind of thing? Is there scientific evidence and studies to back these findings up?

Tex, I don't have osteoperosis but think I'm at high risk due to being on hormonal contraceptives for most of my adult life (to manage the horrific period pains mostly) and also because I hardly eat any dairy and have never liked milk or cheese. Options 2 and 3 seem to be the best. I'm wondering then why my specialist just said to take Loperamide?

But yes, I could certainly cope with significantly reducing the amount of gluten and other sensitisers, it's the complete elimination that I know I can't do. Presumably though Entocort and mesalamine drugs have side effects too, what are they?

I think I am vitamin deficient and am going to ask for some tests, my colleague recommended checking for haemoglobin levels and B12. I'm still tired a lot and lacking in energy and motivation which is really starting to p1ss me off frankly because I've always been such an active person that I hate not being able to do stuff because I don't have the energy. I went for a swim last night, struggled to do half my usual distance and had to give up.

I know that there's more I can do to help myself though. I need to get better organised with food. I'm very tired after work and live alone so there's not much motivation to cook most evenings. So often I end up eating rubbish, which makes it worse. So yes, I will ask my GP to check all my vitamin levels including magnesium, thanks. I must have malabsorption problems, how can you not when you eat a sandwich and it's out of your body again 2 hours later?!!

Will my appetite ever come back? It's nearly 1pm and all I've eaten is an apple so far today and I'm honestly not hungry. Though I was telling my gay best friend about it last night and he said "so you've got an illness that means you're never hungry and are really skinny? sounds like a great illness to have." He was only half serious but I think I will get a similar reaction from a lot of people. But yeah, I'd rather be heavier again and not have to poop 10 times a day and be in pain and tired all the time.

Thanks for the kinds words on smoking, I'm just so frustrated with myself! And for the link on histamines and foods, that's really interesting. I've thought for a while the 2 things must be connected but doctors aren't very good at thinking holistically are they?! It was only when someone said "you've always got stuff wrong with you" and it seemed weird because I think of myself as being very heatlhy that I started making the connection. I'm also hypermobile, don't know if there's a connection there too?... Anyway, I could certainly have a go at removing those foods from my diet and see what happens. I figured out the alcohol connection all by myself years ago. It's pretty obvious tbh, the diarrhoea I used to get after a heavy session was absolutely horrendous.

So thanks very much for all the kind words and advice guys. I'm going to see my GP tomorrow and will ask for some blood tests to check vitamins etc and will ask about testing for food sensitivities. I'll also ask about Entocort and Mesalamine.

ps just discovered Shea Butter infused toilet paper

[Zizzle]

Holly,
Regarding probiotics, can you buy Culturelle overseas? Many people here tolerate it well. Other probiotic pills and powders are often made with milk, so ifyou plan to go dairy-free, you might consider that. Also, some stores sell multi-strain probiotics, which might be good for some people, but many here react badly to them. It may be trial and error until you find one that works for you.

I also have joint hypermobility, recently diagnosed as Ehlers-Danlos Syndrome, Hypermobile Type. It doesn't bother me now if I'm careful, but it caused me trouble as a teen and in my pregnancies (pelvic separation). I have to avoid high-impact exercises and too much stretching, and I sometimes go for acupuncture or chiropractic care when my lower back and pelvis are out of whack. It is definitely linked to GI problems. Most people mimimallly have IBS, others have gastroparesis (slow stomach emptying and/or slow esophageal transit), many have severe constipation, and others develop IBDs like me. We theorize that the defective collagen means we are more likely to have permeable intestines (leaky gut), which then leads to all the other problems -- food allergies and intolerance, celiac disease, other autoimmune diseases. I'm not sure we can fully fix our version of leaky gut, but I'm really trying!! I take L-Glutamine powder mixed in drinks to help heal the permeability, and it seems to help produce more normans, but only if I'm also avoiding my food sensitivities (gluten, dairy, sesame and most soy). Many people with hypermobility battle numerous autoimmune diseases and pain syndromes like fibromyalgia, RA, Lupus, etc. I'm trying desparately to prevent their onset, because once the genes for them are triggered, they are nearly impossible to shut off.

It occurs to me that your reflux issues and lack of appetite may be related to the forms of gastroparesis found in hypermobility.

[MBombardier]

Welcome, Holly!

I just have two things to add to all the excellent advice you've received:

1) You don't have to have willpower to go gluten-free. There are amazing recipes out there and even commercial GF breads that taste, look, and act the same as wheat bread. There are recipes on this site in Dee's Kitchen that are excellent. I have some cookbooks, but at the moment, my favorite place to look for recipes is Pinterest.com. If you plug "gluten-free" into the search box or "gfcf" which stands for gluten-free casein-free (dairy-free) you will be amazed at how many delicious choices there are out there.

I hear you on not being hungry. Sometimes our minds decide that if we cannot eat what we want to eat, then we won't eat at all and we don't feel the hunger signals. Your appetite will be better when you know that there is yummy food that you can eat with confidence that it won't cause you pain.

2) I used to have heartburn 24/7 until I stopped eating gluten and the other foods that I can't tolerate. Now heartburn is a sign that I have eaten something that I shouldn't have eaten. Many of us have experienced a lessening or ceasing of heartburn like this. I wouldn't be surprised if you have the same experience.

Welcome again! Feel free to ask questions, vent, cry, whatever. We've all been there, and you will get your life back.

[tex]

But you're saying that I'm at risk of other autoimmune diseases if I don't right? Like what kind of thing? Is there scientific evidence and studies to back these findings up?

Yes, there is plenty of scientific research published in prestigious peer-reviewed medical journals to support this claim. Unfortunately, it takes a lot of time to post detailed information and references on issues such as this, because much of it is not obvious, and requires interpretation and explanation, and I have to get back to work. We're in the middle of wheat harvest here in Texas, and in my spare time, I'm trying to finish a book that I'm writing which covers this topic. Once I finish the book, it will be easy to point to it or quote from it for explanations, and virtually everything in it is extensively referenced to existing published research.

Zizzle listed a couple of autoimmune issues for which people with hypermobility issues have an increased risk, and those AI diseases are also linked with untreated gluten-sensitivity. Untreated gluten-sensitivity increases our chances of developing virtually any AI disease you can name, including RA, diabetes and especially osteoporosis and IBDs. For a quick reference on that, check out our poll on AI diseases:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=3715

The longer we remain untreated, the more damage we accrue (some of which will eventually become permanent) and the more AI diseases we develop. It is also a fact that having AI diseases greatly increase our chances of developing other AI diseases. Virtually all AI diseases can be controlled (if treated before too much permanent damage develops) by diet changes alone. Once permanent damage is established, that damage cannot be reversed (obviously) but additional damage can be prevented by those same diet changes. Your doctor will never tell you this, because they make their living treating disease, not preventing it. Anytime a disease is prevented, one or more doctors lose a patient, and that hurts their bottom line. If all AI diseases were prevented, the only doctors who would have a sustainable job would be those in the ER, patching up broken bones and other emergency trauma issues.

Tex

[Leah]

Hi Holly. Wow, that was a mouth full, wasn't it?

If you haven't already noticed, Tex is an expert on much of this stuff, so please take his information seriously. We are all waiting anxiously for his book to come out :)

The autoimmune thing is a bit frightening. I have CC , hypothyroidism, and DIV (desquamative, inflammatory, vaginitis). I'm hoping that the symptoms of the DIV lessen as my diet gets cleaned up.... and that I prevent any more.

I take culturelle for probiotics.

Congrats on your "normans". I hope it continues.

Keep us posted

Leah