Newbie to LC

[WhirledPeas]

Oops, I meant this to go into "Introductions". Didn't realize if you name your subject it creates a new one... Hoping to hear back before I start my meds today. a newbie :)

Hello!

My name is Wendy and I was just diagnosed on Tuesday with LC (after a colon biopsy) and gastritis (after an upper endoscopy). At first I was relieved and somewhat elated to finally have an answer to so many years of struggling with GI issues with the "IBS" diagnosis! Now after educating myself a bit in the last day or two, I'm realizing this is not something easily "cured". To be honest, I'm feeling a little overwhelmed after reading the forum for the last three hours. Trying to read it all in one night is not a good idea. ;-)

I need your help. My GI doctor prescribed BUDESONIDE 9 mg in the morning. He has only seen me once in addition to my upper and lower endoscopies over a week ago. (I am very happy with him by the way which is a refreshing change for me!) I gave up on my last one that I saw in 2006 and have been flying solo up until now. I was hoping to talk to him before I start my first day of the med. Waiting for his call back. I'm a little nervous about taking it. I want to make sure it's what I need. My symptoms are not your typical LC symptoms. When he called me to tell me my results he asked how I was feeling. I told him that the burning in my stomach (gastritis) had subsided and the only problem I had at the moment was constipation. He said, but I thought your problem was diarrhea! I then explained to him like I did in the office that I bounce back and forth between the two, but more often constipation. Sometimes doctors don't always understand or hear what you're trying to say. He's a good one though.

Perhaps if I tell you more about my history maybe you can tell me if this sounds "norman" (ha) for some folks with LC and someone who needs this medication from your personal experience.

I don't have daily, chronic diarrhea and cramping. It's hard to imagine that others suffer more than I do, but this forum has shown me it can always be worse, so gratitude is in order!!! :-) I have typical chronic IBS type symptoms that come and go and vary for last 12+ years! I swing back and forth between a diarrhea flare up (lasts usually 1 day, maybe on the loo 1-2 times in morning unless it's the infrequent occasion a few hours after eating (w/ or w/o cramping) something that feels like mild food poisoning usually after eating at a restaurant which I now avoid) and then constipation because of reverting to the BRAT diet for 3-4 days followed by a bland, low fat & low fiber diet and slowly exchanging low fiber starches & grains to medium fiber ones (like brown rice, semi-whole grain breads, baked potato, eventually sweet potatoes, baked apples, prunes) to help relief the constipation. I've been on this vicious cycle of trying to balance out my system and avoid a diarrhea flareup since 2001. I came up with this "dietary system" through trial and error.

In the last two years my flareups have become more often and my diet has become more limited (less nutritious) in the attempt to avoid having a flareup. When this started 11 years ago, I knew nothing about how to manage "D" and went back to a very normal diet which landed me in a very fragile state of health. Almost hospitalized. Lost 3 dress sizes and I didn't know why.

Meanwhile I may avoid having "D", but on a weekly if not daily basis have some sort of GI upset that's unpleasant, but not as debilitating as a "D" flareup. In the past maybe pre-2010, I was always able to revert back to eating moderate amounts of fresh, raw fruits and veggies and be able to digest them when I wasn't in flareup mode. I used to eat tomatoes and berries daily! I've been too scared to try to eat some of those things since so many times when I did in 2011 I'd regret it. I'm sure all of this sounds familiar to some of you. In 2001, I cut out caffeine and alcohol as well as fatty and spicy foods among other things . As long as I was not in "D" flareup mode, I was able to eat cheese. I've cut out all dairy lately because of the gastritis symptoms. Yogurt has caused me to have "sour mouth" (reflux), so I've cut it out in the last few years. It's so weird how you can eat something one month or one year and be fine and then boom you're body doesn't tolerate it. More reflux than "D" though.

Doctor suggested if I don't respond to the medication that I should have genetic testing for the Celiac gene. Not sure if I'm labeling that right, but it's related to gluten intolerance. I'm thinking I should have it anyway! It would be nice to only cut out gluten if I have to! It's a large part of my limited diet!

If you read all that, you deserve a cookie (possibly GF)! :-) It's a relief to find a community that understands all this. Family and friends don't always understand and some have a hard time with chronic illnesses. At least now maybe I'll get a little more respect (ie. compassion) with an IBD diagnosis than "just" IBS.

I am looking forward to hearing your responses and getting your take on this since my symptoms don't mirror the majority of the posts I've read on here. Although maybe they would be the same if I didn't eat as drastically as I do! Is it possible for you to avoid LC diarrhea by eating the BRAT and a low fiber low fat diet even if you are inflamed down there? I don't know how this illness works.

Muchas Garcias! :-)

Wendy

P.S. My vice is cookies and dark chocolate which I should avoid, but I eat when I'm feeling better. Chocolate and gastritis is a no no! All the good things are no no's! lol I dream of eating mangoes again. ;-) There should be a "fantasy" thread about food on here! LOL

[Leah]

Welcome to our family Wendy. The first thing you must know is that we are all slightly different in how we react to what we eat.

There are a number of us who go back and forth between D and C. Frustrating, huh? I am not sure Budesonide is the right drug for someone who also has C. I took it for 6 months successfully, but I was D dominant.I'm sure someone will chime in about that.

IBS. IBD... it's all about inflammation and what you need to do right now is remove all the foods in your diet that cause it. Since you have been "reading up " on here, you probably know that the GIG FOUR culprits are gluten, dairy, soy, and Egg. Then there are the "irritants" like RAW fruits and veggies, citrus, tomato, caffeine,beans and legumes...etc. You have already discovered these on your own. I'd stay away from them until your symptoms are under control and then you can test them one at a time back in. After 1 1/2 years, I have been able to add things back in, but I still don't tolerate fruit or caffeine :(

If you want to know for sure, you can send away for the intolerance test kit from Enterolab. it's usually an out of pocket expense, but will give you answers fairly quickly. Check out their website.

This disease is no fun. It takes a lot of time to heal. Detective work and patience is needed. We are all here for you though :) Ask anything

Oh, and even if you have Crohn's or Celiac, that wouldn't negate the LC diagnosis.

Take care and keep us posted
Leah

[tex]

Hi Wendy,

Welcome to the board. You posted in the right place. We don't have a dedicated "Introduction" forum. Those "Introduction" threads were simply introductory posts made by new members who chose to title their topic "Introduction".

Your pattern of reactions is somewhat similar to mine, except that my cycles were longer, usually lasting for approximately a week to 10 days. We have a few members whose dominant GI symptom is constipation. Most GI docs have never heard of that, and would probably argue that it's impossible. Trust me, with this disease, virtually any symptoms is possible, and virtually any and every organ in the body can be affected. The good news is that once we get our digestive system symptoms under control, our other symptoms will usually fade away, also.

If you are not having daily diarrhea (D), then taking budesonide will very likely be counterproductive, because it will make your constipation (C) symptoms much worse.

To cut to the chase, despite what any GI doc might tell you, the key to controlling this disease lies in diet changes. While drugs can mask the symptoms, in order to stop the inflammation that causes the disease from being generated in the first place, we have to stop eating the foods that are causing the inflammation. Drugs can help to minimize the symptoms while the diet changes are taking effect (it takes a while for the diet changes to heal the gut), but without the diet changes, soon after the drugs are discontinued, our symptoms will relapse.

Research shows that when the genes that predispose to MC are triggered, the genes that predispose to gluten sensitivity are also triggered at the same time, and that opens the door to other food sensitivities, such as casein (the primary protein in all dairy products) and soy, and for some of us, eggs. If we stop eating all the foods that cause the inflammation, then our intestines will slowly heal.

Since these foods are triggering the production of antibodies (in our intestines), this initiates an autoimmune type reaction that will continue as long as any trace of the food is ingested. Therefore, a very strict diet is necessary, but if you are careful to do it right, you should be able to get your life back. The success rate of members here is extremely high, so that should offer some encouragement.

You have already discovered that fiber is contraindicated with the disease. We also have to minimize sugar intake, and avoid all artificial sweeteners, and the other items that Leah mentioned, at least until after we have done some healing.

Regarding the celiac blood tests, unless you have fully-developed celiac disease, those test results will always be negative because they are incapable of detecting both the early stages of celiac diseaese, and non-celiac gluten sensitivity, which is the type of gluten sensitivity that most of us here have (except for those members who also have fully-developed celiac disease). As Leah pointed out, a negative celiac blood test does not rule out gluten sensitivity, and we are at least as sensitive to gluten as the average celiac. Some of us are even more sensitive than most celiacs.

Again, welcome aboard, and please feel free to ask anything.

Tex

[WhirledPeas]

Leah,

Thank you so much for your welcoming note. The doctor didn't call me back, so I just phoned now. The person relayed my question whether Budesonide would help someone who has C prominent LC with occasional D flareups. I am told he said he is aware of that and wants me on this medication. I feel better about taking it now. Previously he said I might be on it for 2 months. The Rx is for 3 months though.

Do most people on here tolerate it well? Is there a significant chance it might cause diarrhea or other GI disturbances? The bottle says to take it in the morning, but I'm a night owl and tend to not have breakfast until 11am or so. The pharmacist said she didn't think it would be a problem if I took it at noon. Today I have no choice since it's almost 1pm. :-) Wish me luck!

I won't see the doctor for another 3 weeks. I am curious about the Enterolab intolerance testing. Is food allergy testing with skin pricks different and how so?

Grateful to find you all,

[tex]

I am told he said he is aware of that and wants me on this medication. I feel better about taking it now.

Your doctor doesn't understand how to properly the disease. The fact that he is not recommending that you cut gluten out of your diet right off the bat is clear evidence that he knows virtually nothing about treating the disease for long-term success. Corticosteroids are only a short-term treatment that will simply mask the symptoms, and he mistakenly thinks that budesonide will heal the gut. It will not. In fact, research shows that corticosteroids actually retard healing. Expect budesonide to make your constipation much worse. And if you do not remove gluten from your diet early on, soon after the budesonide treatment is ended, your symptoms will be back to square one.

I'm not a doctor, so I can't advise you to not follow your doctor's orders. I can only tell you that his recommended treatment program for you is wrong, and I can provide the medical research documentation to back that up, if you want.

Tex

[WhirledPeas]

Tex,

Thank you for your informative reply... Much appreciated! After you posted your message my new message appeared saying I confirmed with the doctor's office my concern. The GI doctor said he is aware that I am not D prominent and only have D flareups (in the last year or so) every 4-6 weeks. (It used to be every 3-4 months btw). He wants me on this medication. I'm torn at the moment at what to do. I have been very impressed and happy with him thus far (1 appt + endoscopies recently + phone consult last week). I have C when I eat too much low fiber foods (white bread, crackers, etc.) or when I travel and am out of my routine. It's not every day that I have this issue. Just more often than "norman" and more often than desired! It's a gift when I don't have either problem for a week!

I need to figure out a step by step plan otherwise it's overwhelming the whole elimination diet thing. Maybe do the Enterolab testing first? Anyone know how much it costs? Know how much the gene testing for celiac is? (not covered by insurance I imagine)

Well it's 1pm and I better decide if I'm going to take my first three pills of Budesonide.

Confused, eek!

[WhirledPeas]

P.S. Tex, during our initial consult he did suggest that I could try to go gluten free if I wanted to. Also, said I could consider genetic testing for celiac. I would be interested in reading the medical reports you spoke about in your last message. Are they online and links you can share or do we need to share email addresses? I am wondering if I should see if I can schedule an appointment for next week to talk to him again and bring in my concerns and some of the reports you mentioned before going on this medication. It's an uncomfortable situation to be in. Just got off the phone, so maybe there is another reply from you since I started writing this.

[tex]

Hi Wendy,

I apologize for adding to the confusion. If you want to stay on the good side of your doctor, then you will probably need to take the budesonide. If I were in your shoes, I would monitor the C very carefully, because if it gets out of hand, it can become a life-threatening situation (to say nothing of being extremely uncomfortable). If the budesonide doesn't seem to make your symptoms worse, then no harm done. If it causes your symptoms to become worse, though, please call your doctor's office to make them aware of what is happening, especially if you are having severe cramps.

Here is a link to the tests offered by EnteroLab. Note that the DNA tests that they offer are much more comprehensive than the gene tests offered by their competition (such as Prometheus Laboratories). EnteroLab's gene tests include not only the 2 major celiac genes, but all genes that predispose to gluten sensitivity, (and there are many). EnteroLab charges about a third as much money for their test, as Prometheus Labs charges for theirs.

Some insurance companies will pay for this testing, and others will not. If you call the lab, they can give you the code numbers you will need to see if your insurance company will cover it.

https://www.enterolab.com/StaticPages/TestInfo.aspx

Most members seem to prefer Panel A, or Panel A + Panel C. Personally, I like to see the gene test results, because that can offer important clues in some cases. I believe it is included in Panel B, if my memory is on the ball. Here are links to test results for members here, if you would like to see some typical test results:

These Are The Gene Test Results Known To Date

These Are The Food Intolerance Test Results Known To Date

In general, when taking a corticosteroid (such as budesonide), the drug is most effective when taken in one dose, first thing in the morning. It can be safely taken in other ways (some people split it into three doses at different times of the day, for example), but I can cite research that shows why it is most effective when taken all in one dose, early in the day.

I just noticed that you list GERD as a problem, so I assume that you are taking a PPI. Are you aware that this class of drug is probably the reason why you now have MC? PPIs, IMO, are probably the most iatrogenic drug ever marketed. They have brought GI docs a fortune in repeat visits, because PPIs are a major cause of MC, osteoporosis, C. diff infections, and a host of other health problems.

Tex

[JLH]

Wendy.

Here is everything you want to know about EnteroLab.
Don't let your doctor talk you out of testing with them. We, the PP, KNOW it works. https://www.enterolab.com/

[Zizzle]

Hola Wendy,
I had panel B which includes the easy cheek swab gene test. You can also order the gene test alone for $150.

[WhirledPeas]

Tex,

Pardon my French, but this sucks. It's hard taking a medication knowing it might make my symptoms worse which is what we all try to avoid on a daily basis. Onto more productive things... If done through your insurance if covered, can results from such gene testing affect your premiums or future insurability? Are these tests that you spoke of only related to CELIAC or was Plan B related to other diseases? I'm hesitant to have a full spectrum gene testing related from A to Z. Ignorance is sometimes bliss. I am assuming I will need to get my doctor to write a RX if it is covered. Should I call Enterolab and find out the code and then call the insurance company and see if it's covered and if it is, then call the doctor's office to ask for specific script for it? So much could get lost in translation without speaking directly to the doctor. I wish I could email him. If it's not covered, then I would probably need to call his office and ask his recommendation for which tests to get to keep him in the loop. Any suggestions on how I should do this would be helpful.

I don't want to be labeled a pain in the ass patient. Pun intended!

Looks like I'm going to put off taking the medication decision until tomorrow. At the moment, my outlook on how I'm doing is improved in relation to how I might feel if this med makes me worse and knowing LC could be harder on me than it is (thank G-d). Status quo was not acceptable two weeks ago and now I'm like it ain't that bad. When I went to the country away from all stress for a month last year I had fewer symptoms. All I can think about is going back there! :-)

Yes, I read that last night about PPIs. The only PPI I have been on was Protonix from 2001 to 2006 and I took it upon myself to get off of it. In 2001 and 2002 I had GERD and IBS symptoms at the same time. In January 2002, my nightmare started where I couldn't digest food properly and everything went straight through me for a few weeks. My GERD got worse because of it. I did not know how to manage it and the doctor did not advise any dietary strategy. I had to figure it out all on my own. I probably would still have those severe symptoms if I didn't stop eating certain foods after a D flareup. I rest my gut when that happens and then BRAT then bland diet. I don't take anything for GERD anymore despite having some symptoms. Not typical heartburn unless I eat something on rare occasion that I normally avoid. Just sour mouth and burning in the throat, but that may be from the gastritis.

P.S. Thanks Joan for the welcome and the link... :-)

[tex]

Wendy,

There is a tiny chance that the drug will not make your symptoms worse. I'm just offering my opinion, based on the accumulated experience of the members here. Remember, I'm not a medical professional. I'm just someone who has lived with the disease for a long time, and who has done a lot of research on it (enough to write the first book ever written about the disease).

If done through your insurance if covered, can results from such gene testing affect your premiums or future insurability?

I have no idea what lies ahead in the insurance ripoffs (pardon me, I meant in the insurance business), but as far as I am aware, there is nothing in the regulations that would imply that gene testing could affect current coverage or costs. If that ever happens, I can assure you that insurance companies will require gene testing, if they think that the information is relevant to their bottom line.

Genes only indicate a predisposition, not a sure thing. Insurance currently hinges on diagnosed diseases, not on the possibility of disease developing in the future (with or without genetic information). If insurance companies had any brains in their administration, they would embrace these tests, because diet intervention can prevent many diseases from ever developing, and that would save the insurance companies billions of dollars in the long run.

Are these tests that you spoke of only related to CELIAC or was Plan B related to other diseases? I'm hesitant to have a full spectrum gene testing related from A to Z.

EnteroLab only tests for and reports genes that predispose to gluten sensitivity. IOW, just as you can see in the sample list that I provided a link for, you will only receive a listing of the two alleles that are found in the respective location in your DNA chain where genes that predispose to gluten sensitivity are located.

Everyone has two genes at that location, some are recognized as as associated with celiac disease, and some are recognized as associated with non-celiac gluten sensitivity, and there are genes that do not associate with gluten sensitivity in any known way. If you order the more expensive Prometheus test, and you do not have any celiac genes, then your report will say nothing, except that you do not have any celiac genes. The EnteroLab results, by contrast, will simply tell you specifically what those are, whether they are celiac genes, or non-celiac genes that predispose to gluten sensitivity (or genes that are benign). So far though, no one here who has MC has ever had a benign DNA test result (because if that were the case, they couldn't have MC).

Trust me, knowledge is power (not a disadvantage) when treating this disease, and the more we can learn about the genes and anything else that is associated, the better equipped we are to be able treat the disease effectively.

Tex

[Zizzle]

Regarding insurance, unless you share your results with your doctor and have them added to your permanent medical record, no one needs to know you ever had the test. It's between you and Enterolab. 40% of caucasians carry a celiac gene, so I doubt it would qualify as an insurance risk anyway. I have the HLADQ2 gene, which let's me know I may develop celiac someday (if my severe gluten intolerance isn't celiac yet), and it's also associated with a wide variety of autoimmune diseases (liver, thyroid, diabetes, etc). My other HLA gene may be associated with other conditions. It's good to know from a prevention perspective, and it makes me extra careful about avoiding gluten. It's also good to know my kids are at risk too -- they eat a low gluten diet and I will test them for celiac disease periodically.

[gluten]

Hi, Researchers in Boston state that "we are born with an average of 10 or more defects". In speaking with a genetic counselor about the genetic defects being passed on to future generations. She stated that now they can concieve a child outside the womb and remove the defects that have been identified and plant the corrected cells. In many states this procedure is covered by insurance. This would require a genetic tests. Check on laws by state that prohibit insurance discrimination because of the results of genetic testing. There is alot of research done on how diet and nutrition effects genetic defects. I know many people that have gentic defects that have been identified by genetic testing and do not have any symptoms. I have not found any doctors in the medical community that recognizes the diet and nutrition connection. Jon

[Zizzle]

Of course the HLA DQ2 gene should not be considered a genetic "defect." On the contrary, it was a gene that allowed our ancestors to survive plagues and epidemics. It beat natural selection for a reason, but is not adapted to our current environment of insufficient microbial diversity and processed/altered food. Who knows, if the new bird flu or SARS comes a-calling again, maybe we'll be the ones left standing!