MC and Spondylitis

[faithberry]

Hi everyone,

Hope everyone is doing OK, and even good!!!!

I feel I've been going round and round in circles with my illnesses and going back to old places again and again.

I'm pretty sure now that I am having an MC flare (even if there's C and no D) plus some type of spondylitis, maybe ankylosing spondylitis. My doctor says that given I have the HLA B27 antigen, this could account for some of my symptoms.

I've found two references that associate MC with AS and they even say it can be asymptomatic.

The family practice notebook www.fpnotebook.com says:

2. Microscopic Colitis (often asymptomatic)
Occurs in 25-40% of Ankylosing Spondylitis

The book Rheumatology Secrets by Sterling G. West says:

Up to 50% of AS patients have asymptomatic LC/Crohn's like lessions in right sided colon biopsies.

and 30-60% of AS patients have asymptomatic microscopic colitis (LC) in their terminal ileium and colon.

So this is what I think is going on with me. Plus I had klebsiella in my stool several years ago, which some researchers associate with AS. I've never been totally on a starch free diet (too many almonds and sunflower seeds in the past). Since I've been eating so much more starch, slipping it in starting in 2007, I have gotten progressively worse in all ways.

Does anyone else have problems with any type of spondylitis?

I seem to be having an ongoing MC flare, my C-reactive protein is at 8 (not so high, but still not normal) and still having a zillion problems with foods. I gave up whole grains in April and gave up rice cakes 2 weeks ago and white rice one week ago. Some people have had success on a no starch diet (www.kickAS.org). I've been eating chicken, a few vegetables, an avocado today and plan to try eggs tomorrow. I'm tolerating the chicken so much better now that I'm not eating rice. My calories are marginal, but I am determined to give this ago and see if it will subdue the inflammation.

Any suggestions on what helps you food-wise when you are in a flare would be helpful. Can you eat eggs, for example? Can you eat a chicken breast?

Of course, the mast cells are involved too (elevated serum tryptase); they may be reacting to the inflammation or fibrosis of AS (reactive mast cell hyperplasia) if not the intestines, but could be both.

I feel so stupid going around in these circle again and again. I had an encounter with AS at the beginning of my illness when I could bend or get out of a car, but since there was no radiologic evidence, the rheumy said I didn't have it. But she neglected to tell me that it takes 7-10 years for the erosion to show up. So I could have had early AS (not recognized by doctors) or undifferentiated spondylitis. I feel stupid eating all those grains, but the connection with my problems wasn't so obvious. Lots of vegies have starch too and I could never tolerate the real starchy ones.

Any ideas for getting out of this flare with my food would be appreciated. Still taking Gastrocrom and H1 antihistamine, but no more Zantac.

All my love, Faith

[tex]

Hi Faith,

I believe that virtually all of us go in circles, sometimes, when we're trying to find the path to remission.

FWIW, I also believe that there's a pretty strong link between AS and MC. If C is your only indication of MC, however, are you aware that C is one of the possible side effects of Gastrocom? Antihistamines are also known to cause C. It's possible that the combination could even have a synergistic effect. I'm not trying to claim that you're not having an MC reaction, I'm just pointing out that if C is your only suspect symptom, there are many drugs that can cause C. I have to deal with it also, because Parkinson's causes C, and the drug that I'm taking to slow down the progression of the disease, Azilect, (Rasagaline), also causes C.

When I was recovering, I pretty much lived on pork, chicken, eggs, and potatoes, with a little rice, broccoli, or green beans thrown in occasionally. When I was really sick, chicken soup was pretty much the mainstay of my menu.

But she neglected to tell me that it takes 7-10 years for the erosion to show up.

You know, I've noticed that doctors neglect to tell us a lot of things. I've often wondered why. Do they really think that what we don't know won't hurt us?

I wish I had some good advice, but unfortunately, I know very little about treating AS.

Love,
Tex

P. S. FWIW, according to research, it is claimed that not treating asymptomatic celiac disease, will not result in an elevated risk of non-Hodgkins lymphoma, (contrary to the outcome when symptomatic celiac disease is not properly treated). I would surmise, then, that not treating asymptomatic MC, should not incur any increased risk of adverse events, but that's just my unprofessional opinion, not backed up by any research data.

[faithberry]

Thanks Tex for your thoughts and the list of foods you ate when MC was bad.

This is what I'm eating at present:
chicken
zucchini (peeled)
fennel bulb (tiny amount)
bok choy
asparagus
clarified butter
All vegetables cooked very well.

Trying:
avocado
melon
eggs

If you see any warning signs there, please let me know. I really need more calories! Hence, the avocado.

Thanks for the warning about the drug side effects. I've had the C continuously for eons now, so I really doubt the H1 or Gastrocrom are at play in that regard. I don't think the MC ever really went away. If starch is the issue due to a klebsiella infections, it just makes sense that the MC has stayed active and the mast cells have jointed the party. When I started eating more starch, they simply got more and more active. The C may be due to the Kp. I've had a lot of burning in the intestines and when I tried some black-eyed beans (a tiny amount) it got really bad. But the burning also spreads to my hips and up my spine when it's really bad. This all started last December, but it's taking me time to really sort it out.

I'm not planning on taking any drugs for AS. There's good information at www.kickAS.org People there have great success with the NSD - no starch diet. This is much more than Paleo; it's absolutely no starch. Even innocent seeming vegetables and fruits can have starch. To begin with one tests all food with iodine to be sure.

If any one has experience with spondylitis and MC, I would love to hear your experience.

I do feel that there's a way out now, so it's just a matter of patience.

Take care

Faith
http://mastcellsandme.blogspot.com

[tex]

Some of us have had problems with clarified butter, (ghee), during reactions, while others seem to be able to tolerate it OK.

Watermelons didn't work at all for me, when I was reacting/healing. I've read where others have had problems with them, also. I'm not sure if that applies to all melons, or only watermelons, because I've never cared for any other types, so I don't eat them.

The obvious way to gain calories, (IMO, anyway), would be to include more animal fat in your diet. Is there any reason why you shouldn't or can't do that? Taking a low-carb diet to extremes, for example, would result in a meat-only diet. One cannot survive on only lean meat, however, because such a diet will result in what is known as "rabbit starvation", (a fatal condition, if not resolved promptly). A diet of fatty meat, however, will work, (this was proven back in the 1930s, as described in the article at this link):

http://www.biblelife.org/stefansson2.htm

Animal fat would appear to be the safest, (and healthiest, believe it or not), source of calories.

http://www.ncbi.nlm.nih.gov/sites/entre ... t=Abstract

You know, burning sensations, (especially in non-GI body parts), are a neurological symptom, (they have the same origins as paresthesis, and/or numbness. (I've done a fair amount of research on that, since my MSG-induced TIA, (at least I believe that it was an MSG-induced TIA). I think there needs to be a lot more research done on the neurological aspects of gluten sensitivity, and how it is linked with AS, and a lot of other conditions.

I have a hunch that long-term gluten damage, (due to gluten crossing the blood/brain barrier), may play a big part in the development of AS, at least in the neurological aspects of it. The tip off, IMO, is the fact that that MC is asymptomatic in such a high percentage of cases of AS. That allows the gluten to continue to cause damage, undetected, possibly for decades. Bear in mind that I'm just thinking out loud here, but I think that the asymptomatic feature is the key here, to insight into the reasons for the development of a wide spectrum of autoimmune disorders, triggered by gluten damage to the brain, and probably the rest of the nervous system. Dr. Hadjivassiliou, (in the UK), is probably the world's foremost researcher in this area. Anyway, the point is, gluten can cause all sorts of problems with the body, before it ever manifests as a GI issue:

However, neurological dysfunction can also be the sole presenting feature of gluten sensitivity.

http://www.ncbi.nlm.nih.gov/pubmed/18825674

Tex

[faithberry]

Tex, that's a very interesting theory about gluten and neurological damage. I'm sure that could be part of my brain-related problems.

I think the burning sensations are coming from mast cell mediator release. Mast cells have recently been implicated in arthritis. And, we know they can increase in the intestines too, where they could also cause burning. In my situation, I don't know whether there is a neurological connection, but I'm not ruling it out either. It only happens when I eat.

Yes, I think I will need to increase my intake of animal fat. I started out slowly with just 2 oz. of meat and am now up to 4 oz. This caused problems previously, but seem to be tolerating it fine now. Today I had an egg and that went OK so far. The last time I had an egg, last year, I got extreme pain in my gut! So I think there's some progress happening. I think I'm OK with ghee. The avocado gave me a great calories boost. I'll see how it pans out in the next few days.

If anyone else has food suggestions, I would appreciate it hearing them.

Thanks for all the help. Faith

[Lucy]

I am also sensitive to egg protein -- ovalbumine.

My mother has Parkinson's, and was diagnosed with peripheral neuropathy a couple of years before she got her P.D. diagnosis. A few years after the P.D. diagnosis, she develped what, in lay terms, is called "bamboo spine."
It is narrowing of the spine (A.S.) and, in her case, is probably related to osteo arthritis. She was taken off of gluten due to my sister and I being diagnosed with M.C., and Mother had two of the major celiac genes HLA DQ2, but was asymptomatic of gut problems. We did have to give her medication at times to prevent her medications from constipating her, but never did she have any diarrhea. She may have had more constipation issues throughout her life than I'm now aware of -- not sure.

We recently got her a new wheelchair that has an occipital support behind that part of her skull to reduce the speed bump effect which can make her neck painful when moving in the w/c, particularly when we take her out in her rampvan. I hope the gf diet has stopped the process of the A.S. or bamboo spine from getting worse. I know it stopped her peripheral neuropathy dead in it's tracks as it did my sister's and mine.

Hope this helps.
Luce

[Bifcus16]

Tex,

I think you are right about gluten causing neuro impacts without being noticed through MC or any or GI manifestation. Lots I read and personal experience makes this sound logical.

Faith, my Rhuemy couldn't make a clear diagnosis, was looking at some form of spondylitic arthritis for me. With experience, I now know my symptoms are simply gluten responses.

Your diet looks safe (if limited). So I wonder if there is still way you can be getting trace amounts of gluten? You read about these highly sensitive folk who can react by touching something a gluten user has touched. I hope that doesn't apply to you, but you never know.

People here have talked about chicken being injected with stuff - are you confident yours is unadulterated? Hard to see how gluten can get in fresh vegies, so they are probably safe. No doubt you have already looked at your supplements. What about cosmetics or toiletries? Toothpastes and lip products especially? Or how about gluten products at work or trace amounts floating around your kitchen?

You have probably eliminated all these, in which case it may just take a while for the AS to improve (or at least stop getting worse).

I am curious why you are using ghee rather than an oil? There are so many good quality vegie, seed and nut oils to choose from without the risk of dairy proteins getting in there and upsetting things. If avocado is OK, you can even buy avocado oil.

cheers,
Lyn

[tex]

Your diet looks safe (if limited). So I wonder if there is still way you can be getting trace amounts of gluten?

We seem to be on the same wavelength, because I wondered the same thing, but I hesitated to bring it up, considering that the menu items are pretty straightforward, and should be safe, provided that the chicken is un-injected, and there is no gluten in the kitchen. If there is, then I would look for cross-contamination, because as you say, some of us are extremely sensitive to certain allergens, and if wheat flour is ever used in the kitchen, then cross-contamination to some degree, (however slight), is almost a certainty, despite efforts to prevent it.

Tex

[Bifcus16]

Faith,

Another thought about that burning pain. Could it be a result of nerve irritation?

When you describe pain going up your spine, the massage therapist in me comes out and wants to know if there is a nerve being upset to do this. This could be because of muscles tightening as you process the food. They could easily be internal so you aren't conscious of it. If this is so, then treatments which relax the muscles could have a big impact. Think massage, chiro, bowen, acupuncture etc. Even something as simple as a strong stretching or yoga routine to loosen up the muscles of the abdomen and back could help.

Sometimes we blame everything on intolerances to what we eat, when there are other possibilities.

Lyn

[faithberry]

Dear Lyn, Tex, and Luce,

Thanks for your advice and good thoughts.

I agree with Tex's assessment that pre-dx gluten sensitivity probably caused nerve damage and this is a part of my mix. At the present time, both my husband and I have gluten sensitivity so our kitchen is gluten free and we don't eat injected chickens. I only just started eating chicken this week and I've had these problems for eons. Lyn's input about muscle tightening when food goes through the colon is an interesting one. I certainly could use more exercise, stretching, and relaxation so I will take that on board. However, I have gotten these nerve reactions from just drinking water or taking gastrocrom (which is in purified water and doesn't contain other ingredients)...I don't know if the colon was moving yet! Maybe. So I think some of my nerves are indeed messed up.

I appreciate you advice about foods being safe or not safe for MC. I am absolutely certain I have inflammation in my colon at the present time so this really helps.

What I discovered is that the foods on my list are not all safe for AS. It's recommended that you test starch levels with iodine for every food you eat in the beginning of the diet. The iodine will turn black if the food contains starch. I learned that zucchini is hit and miss, sometimes it will be starchy, sometimes not. Fennel bulb is suspect. Avocado is almost certain to cause a pain flare. Apples almost always test positive for starch. I don't have iodine yet, so I've been unknowingly eating foods that probably/possibly cause AS reactions and therefore reactions in the gut too, since I was desperate to get calories.

I ate apples on two days this week and avocados on two days. I had a huge pain flare, I mean really extreme. I couldn't walk up any incline or stairs without pain. It's better but I'm not over it yet. That's pretty convincing evidence that starch is an issue for me.

Lyn, I do not tolerate any of the good oils at all except ghee. They all contain amines, which is one of my sensitivities. My level on the enterolab testing for casein intolerance was extremely low----11 with 10 being the cut off. Tex has pointed out in previous posts that the numbers don't correlate with severity of reaction, but a low number can indicate that you may have more tolerance before a reaction occurs. So I'm not concerned about the ghee and I need the calories.

So this is what I'm doing with my diet now:
chicken breast or thigh 2x a day
one egg omelet 1x a day
cucumber
bok choy
asparagus

Trying out:
arugula (cooked)
melon

All vegies cooked.

People at www.kickAS.org seem to do well with greens, but I need to avoid the high and medium oxalate ones. This seems like an OK diet for MC too, if that's a co-existing issue as I suspect. I'll do this for awhile and see if I can kick the pain!

My doctor concurs that I have problems associated with the HLA B27 marker, so that's the gut and the joints. Plus I cannot tolerate any nightshades or lactose without getting knee pain and haven't been able to for many years. Klebsiella, the bacteria thought to be involved with AS, is a lactose fermenter. That's not a problem for everyone with AS, but many can't overcome their symptoms until they are no dairy in addition to no starch.

Luce, thanks for sharing your mom's story. I'm so sorry she has suffered this way. Great she got the addition to the wheelchair. When I stopped gluten it helped me tremendously with AS stiffness. Gluten is supposed to be the worst grain for AS. Has she ever thought about trying the no starch diet? Maybe that could help more.

Thanks everyone for the help.

[faithberry]

My body doesn't seem to want any vegetables at all, except cucumber. I think I need to stay on the modified Tex diet of chicken and eggs for awhile to calm things down! I pretty sure my inflammation is in the gut from the burning I get down below!

I'm so grateful to all of you. Thanks for all your help, and Tex especially.

[tex]

Faith,

I note that, (unless I'm overlooking something), cucumber appears to have the lowest fiber content of any of the common vegetables, and most of the fiber is in the skin, of course. Without the skin, the fiber content of cucumber is extremely low. Meat and eggs, of course, have virtually zero fiber content.

That does indeed suggest that you're correct - the burning sensation that you feel is almost surely due to inflammation in the gut.

You're most welcome, and I hope you get some relief soon, with the diet changes.

Tex

[faithberry]

Tex, you're right, fiber is another piece of the puzzle. The three vegies I do well with (cucumber, bok choy, and asparagus) have 2 grams or less of fiber. I tested it out today eating 1/4 cup of fennel which has 4 grams of fiber and had problems.

I don't know how I could be so dense! I've been eating so much high fiber food (grains) for the last year (until April). I know it's not good for MC, but if my MC is asymptomatic it's pretty darn hard to know that it's a problem.

I still need to avoid starch, oxalates, histamines, glutamates, gluten, and casein too.

But I'm happy I'm on the right track and have a new non-irritating diet. It's funny a few weeks ago, when I was still eating starch, if I ate chicken or eggs it would be a problem for me. Once I dropped the starch it's OK. But I started with small amounts to let my body adjust and increased over time. Thanks again for the help.

[tex]

Faith,

You're quite right about symptoms sometimes sending confusing signals about the things we eat. Back when I was trying to figure out my intolerances, I even kept a diary, but I never could see any connection between my reactions and gluten. Everything else seemed to make me sick. After I cut out all the gluten, though, (and a few other things), eventually, most of those other foods no longer made me sick.

Tex

[faithberry]

Isn't it ironic! Tex, I was wondering how long it took on your basic diet before you were able to add in new foods? I know we are all different, but I'm wondering if this is going to be for a month or six months.

Thanks!