New here, GF and feeling good, but HIGH autoimmune antibds!

[Zizzle]

Hello,
I'm new to this forum but was diagnosed with MC (Lymphocitic) last summer. I had a 10 year history of (self-diagnosed) mild IBS-D, probably triggered by overseas gastroenteritis episodes, but the D suddenly could not be ignored a year ago, and I had my first visit with a gastroenterologist. I refused Asacol therapy and tried Pepto-Bismol sporadically without much success. My gastro refused to test me for celiac (b/c serum antobodies were negative 5 yrs ago), saying I would NEVER get it. So I got Enterolab testing on my own. I am HLA-DQ 2,3 (Subtype 2,9) with gluten sensitivity, and probable (low titer) dairy, yeast and soy sensitivity.

I've been gluten free and largely dairy, yeast and soy free for 50 days and feeling great. Still have mild diarrhea, but bloating and indigestion are gone, mood and energy improved, and D frequency has decreased dramatically, from 4-6/day to 0-3/day. I no longer feel like my body is desperately trying to get rid of whatever it is I just ate. No need to be near a bathroom all the time. No more blaming MSG, spices, food additives, fat, tomatoes, alcohol, acid, raw vegetables, etc, etc. It was gluten all along! I'm even starting to eat low-lactose cheese again with no trouble. My doc wants a confirmatory endo with biopsy to confirm whether it's celiac, but I don't want to eat gluten again to make the test accurate. Does it matter if I'm GF anyway?

I've just started Pepto-Bismol caps 5x/day for 8 weeks in an effort to completely resolve the diarrhea, but my adherence is spotty. Pepto makes me bloated and I just cant remember to take it all the time! I'm also tryting to remember to take Culturelle 1/day.


BUT HERE'S MY PROBLEM:

I had an itchy post-partum rash after my first pregnancy 5 years ago, and was diagnosed with an autoimmune phenomenon (but no official disease or name for the rash). The rash cleared up after 12 months (when I weaned). I have ANA (1:1280), ASMA/Actin Antibody (57) and Rheumatoid factor (27), and my docs think I'm headed for Autoimmune Hepatitis, RA, MCTD, Sjogren's, etc someday soon. Going GF did not change my titers at all - I was hoping removing the fuel from the fire would help. So I'm left with getting my chemistry and liver function checked at least once a year while I wait for this train to land on some horrible disease that I would much rather figure out how to PREVENT!
Does anyone have experience with MC and high auto-antibody titers and no other disease? MC plus other autoimmune diseases, especially AIH? Could MC be my only disease and the cause of my high titers? (I've read that anti-Smooth Muscle Antibody is an indicator of intestinal damage in celiac disease).

I feel like a ticking time-bomb!

[Polly]

Hello Z. and

Well, you really took the bull by the horn and "tackled" your disease. Congrats! I agree there is no reason for endo procedure to R/O celiac. You already know you are gluten-sensitive and you are planning to avoid it indefinitely, right? Even if you had the classic blunting of the villi, it would not change your treatment plans, right? Culturelle did not work for me - it contains dairy (lactose) and made me worse over time.

Re your autoimmune propensity, my thought would be to relax and wait to see if it is all from gluten. It can take up to 2 years or more of a GF diet for gluten antibodies to be eliminated, and you have only been GF for 50 days. Gluten can have severe and far-ranging effects, as I'm sure you know. There is a good possibility, IMHO, that it could be the major culprit here.

Looking forward to further chats. Keep up the good work!

Love,

Polly

[tex]

Hi,

Welcome aboard. I can't add much to what Polly said. MC can affect every organ in the body, and it can cause the symptoms of many other autoimmune diseases. Typically, those symptoms go away, as the MC is brought under control. That's not to say that it preempts other autoimmune diseases - we are still prone to developing other autoimmune diseases, but that tendency rapidly declines, as the MC is treated, and the symptoms are brought under control. As Poly said, it's too soon to be concerned about the possibility of other diseases. Once you get your MC symptoms completely under control, the risk of developing other issues will be greatly diminished. If the rash is gone, and your liver enzymes are within the normal ranges, you're doing OK, for the present.

Tex (Wayne)

[Joefnh]

Hello Zizzle, it does sound like you are very well informed and are taking the correct steps already in treating the LC. I cannot add to Tex's or Polly's notes.

Keep us posted on your progress






-Joe

[Gloria]

Welcome, Zizzle,

I'm impressed with how proactive you've been about treating your MC. It sounds like you are on the right path by eliminating gluten, dairy, soy and yeast. Soy is probably the trickiest of the four. It is a hidden ingredient in many foods. If you still have D, you might try eliminating all traces of your intolerances. It doesn't take much to cause a reaction. I reacted to a vitamin E capsule that contained soy, for example.

Culturelle did not work for me - it contains dairy (lactose) and made me worse over time.

I just thought I'm mention that Culturelle recently came out with a dairy-free version of its probiotic. It's a little more expensive and not as readily available, but I've found it at Whole Foods and GNC stores.

Gloria

[Zizzle]

Thanks! I will look for the dairy-free Culturelle. I've taken Jarro-Dophilus in the past (but not daily), and I've noticed my symptoms seem to get worse. I figured it might be the battle going on between good and bad bacteria. I never realized I could be reacting to the food ingredients in the probiotic pill!! DUH!

My doc called and said my Vitamin D and B-12 levels were on the low end of normal (D was 30). I'd been taking 1,000 IU/day of D plus 400 in my multi, but I stopped the supplement during the summer. So I'm back on it, taking 2,000IU/day. Bought some allergen-free sublingual B-12 and tried it last night. It gave me the worst headache all of the sudden. Then I read - sucralose - why does a tiny vitamin pill have to be sweet and artificially flavored anyway?!? Aargh.

Oh, and I have an appointment with Dr. Alesio Fasano at the Celiac Center in Baltimore next month!! My PCP wanted me to see a new gastroenterologist to follow up, and I didn't want to waste time with another uninformed doc that yawns at the thought of treating MC (instead of something surgical), and who doesn't believe in food intolerance. So I'm headed straight to the top for real answers!! I'm only a 40 minute train ride away...

[Stanz]

Hi Zizzle,

I'd like to echo the welcomes and how impressed I am by your actions thus far.

I will have been GF for a year next week. I had all the symptoms of RA for years, was told by my rheumy doc that I'd be disabled in 5 years if I didn't take Methotrexate, which I refused. I still believe that these symptoms were caused by the reaction to gluten, and nearly all my RA symptoms have lessened or disappeared since being GF. Also had skin issues that were dx as psoriasis even though all tests were negative. I got no help from Pepto, it had bad side-effects for me. I'm taking LGlutamine and probiotics and the D and B vites. So far, so good. I share your frustration with the sublingual B-12, if you ever can find it w/o that stuff in it, I'd love to hear what brand you use.

So jealous you get to see Fasano, how fortunate you are so close, good for you.

Connie

[Polly]

Hi again Z,

Dr. Fasano is wonderful, it's true. And his research may ultimately be the answer for us! But he is more focused on celiac than the non-celiac gluten sensitivity. A friend of mine who had negative celiac tests but positive tests for food intolerances with Dr. Fine had an appt. with Dr. Fasano that did not go well, in her opinion. She did not feel that he was as tuned in to the non-celiac gluten and other intolerances as she would have liked. But this was about 2 years ago, and hopefully you will have a very different experience.

Love,

Polly, who is sorry that she always seems to be raining on someone's parade

P.S. We must be neighbors - I live about 15 mi. north of Baltimore (Cockeysville).

[Stanz]

Polly, who is sorry that she always seems to be raining on someone's parade

Don't worry, Polly, I know if I were Zizzle, I'd rather go in to see Fasano with a bit of skepticism instead of expecting a miracle, only to be crushed again. Hopefully he has learned some stuff in the last 2 years. Lord knows the information is out there.

[Zizzle]

Thanks Polly,
I am HLADQ2 and strongly suspect celiac, I'm just not willing to eat gluten for 6 weeks to prepare for bloodwork or a biopsy. My docs failed me in my MC work-up by REFUSING to order a celiac panel despite my having 90% of classic celiac symptoms. She said a blood panel 5 yrs ago was enough proof that I would NEVER get it, but now I know it can be triggered and start at any time!! It may have started post-partum along with that rash; hell for all I know the rash was DH and my docs were too clueless to recognize it! If that was the beginning, of course the blood panel may not have picked it up - it was too early to catch real damage.

Being gluten free, I now have a massive response to accidental gluten ingestion. Instant stomach rumbling, racing to the bathroom within an hour, major D for 8 hours or more, and a sense than my insides are "weeping". It's not fun, and I can't imagine going to work and raising my kids with those symptoms while I wait for a darn test to prove it.

If that's what Fasano wants me to do, then I guess I'm stuck being my own doctor forever.

[Gloria]

then I guess I'm stuck being my own doctor forever

Yeah, most of us here have become our own doctors. We only go to our GI for our prescripton meds.

Gloria

[ant]

Dear Zizzle

Just wanted to say hi and welcome.

You probably already know about Prof. Cordain (of Paleo diet fame) and his thinking on autoimmune reactions related to food.

You might find this thread interesting.

http://www.perskyfarms.com/phpBB2/viewt ... ht=cordain

All best wishes for your continued progress, Ant

[Zizzle]

The Paleo diet info is very interesting. Just when I thought I could eat tomatoes again...darn lectins! I wanted to start eating more beans too.

Regarding the upcoming visit to Dr. Fasano, I've read that you only get 10 minutes with him, but otherwise spend some time with a PA and nutritionist. What should my most important questions be? What would you want to know from the ultimate source of new info?

[tex]

That's not much time.

I would ask him if he believes that his new product, (which is designed to suppress the production of zonulin), might benefit patients who have microscopic colitis. (Of course, it has to be approved by the FDA, before it will be available).

Tex