Just curious

[nursegirl]

Because of the link between MC and celiacs I was wondering if any of you have tested positive for celiacs, or did you just eliminate food based on enterolab results or corrolation of offending foods with MC? By the way today will be my first shot at going gluten free. Going to stick to basics for now. Since I am not having any GI symptoms now. i am wondering how I will now if its working. Also once I stop gluten and then accidently ingest some will that start symptoms I am not having now? So much to learn.

[tex]

Hi Judy,

Some of us determined our food intolerances by keeping a food and reaction diary, many of us ordered tests from Enterolab, to confirm our suspicions, and/or save time, and we probably have around a half dozen or so members who are diagnosed ceilacs, (in addition to MC). Generally speaking, though, unless someone has fully-developed celiac disease, they will test negative to the classic celiac blood tests. Usually, it takes several years for the gliadin antibodies to build up in the intestines to a level where enough of them leak into the bloodstream to allow a positive blood test result. That's why the stool tests at Enterolab are so much more sensitive than the blood tests. The antibodies to food sensitivities are produced in the gut, not in the blood.

You will find that after you eliminate gluten from your diet, you will become more sensitive to gluten. This is because when the body is flooded with a constant flow of antibodies, it reaches a point of equilibrium, where inflammation is constant, but no significant changes take place, so nothing "remarkable" happens. After you eliminate gluten for a while, the antibody production slowly begins to subside, and it will eventually reach a point where the prevailing antibody level is below the threshold to trigger a reaction, and symptoms will cease. Everyone has a different sensitivity threshold. Apparently, your threshold is quite high.

As your antibody level continues to decline, though, if any gluten suddenly appears in your food, your immune system will immediately respond to it, by escalating the production of antibodies. That sudden increase in antibody level will trigger a significant reaction by your immune system, (T-cell production, causing more inflammation). IOW, a sudden rise in antibody production brings a massive response by your immune system, whereas a static state, (when equilibrium is present), tends to allow symptoms to recede.

It's similar to what happens on Wall Street when important financial news is first discovered. The market will go wild for a few days, or a few weeks, but eventually, when no more fresh news becomes available, the market will slow gravitate back towards the level at which it was located before the first news was announced. It's the "surprise" that really drives the market, much more than the news itself, and the immune system is affected in a similar fashion, by food sensitivities.

After you have been on the GF diet for a while, you will also discover that your immune system is more sensitive to additional food sensitivities, (other than gluten). This is because the immune system can effectively "handle" only one major issue at a time, and it will tend to ignore other issues, (that it perceives as a lessor threat), until it has the primary problem under control, first. This is why inoculating an IBD patient with worms, will cause the inflammatory bowel disease to go into remission - the immune system is completely distracted by the worms, which it perceives as a more serious threat, so it will stop causing the autoimmune reaction that results in the IBD symptoms.

Most doctors are not aware of this phenomenon, so don't be surprised if they deny that it can happen. You'll see what I'm talking about, though, after you've been on the diet for a while. Eventually, after your antibody levels recede to minimal numbers, an accidental ingestion of a food to which you are sensitive, will bring a smaller response, and the symptoms will last for only a few hours, rather than days, the way that the reactions occur early on.

I hope this addresses your questions. If my explanations have only added to the confusion, though, please don't hesitate to bring it to my attention, and I'll try to do a better job of clarifying the issues.

Tex

[harma]

I was tested for Celiac, blood work and a small intestine biopsy, both negative. This was done at the same time the GI took the samples from my colon to be tested for MC. After I heard I had MC, I found this board, heard about enterolab and did the enterolab testing. In this test I was positive for gluten.

I am gluten free since mid november 2009 (and milk, soy, yeast and egg).

I still have my doubts about the negative result for celiac disease. Maybe the small intestine damage was further in the small bowel. My reasons for this doubts: 10 years of bowel problems, bloating (always looking 5 months pregnant), early stage of osteoporoses, high fat score in the entereloab testing.

In the time in between the first MC symptoms and the dx of have done a lot of reading on all kind of bowels disease to figure out what could be wrong with me. I really was convinced I had celiac. I recognized so much in all the stories I read about it. I really was confused when I heard I had CC instead of celiac. I was so sure the gluten were toe source of my bowel problems.

Also during the time in between my first symptoms and the dx, I experimented with gluten free food and the results where amazing than, almost the same day, normal stools. I didn't stay gluten free than, because to get a proper dx you needed to stay on gluten (still thinking it was celiac)

After the dx, for two days I was really confused, than I found this board and found out that gluten cause MC too. So it all did make sense.

But as tex always says here, I doesn't really matter if we have MC with or without celiac the treatment is the same, no more gluten.

Probably MC and celiac are two related diseases both caused by gluten (and MC may also have other causes). 4% of the celiacs have MC (or was it now 4% of the MC'ers have celiac) and up to 30% of the celiacs have colon damage like MC which recovers after the gluten free diet.

Celiacs say they have to eat gluten free "they have no choice", others in their mind, doing it for feeling better or other health reasons, do have a choice. But actually I think MC'ers also don't have this choice. Gluten free is as necessary for MC'ers as for celiacs.

[Rosie]

Since I am not having any GI symptoms now. i am wondering how I will now if its working.

Judy, my first sensitivity was to dairy, and I was dairy free for about 4 years. The flare that I had that resulted in the colonoscopy and LC diagnosis presumably resulted from some sort of reaction to a supplement I was taking, because the GI symptoms went away when I stopped taking them. I found this Forum after my diagnosis, and I wondered if I was gluten sensitive because I wasn't having any GI symptoms. But I decided to get tested anyway just to see. I also decided to go gluten free while waiting for the Enterolab results and was totally amazed at the other improvements in my body. I had asthma and sinusitis with a very hoarse voice and constant throat-clearing. Within a week, everyone was commenting on how much better I sounded. Now a year later I haven't had to use my inhaler in months, my voice is back to normal, I hardly ever clear my throat and the post-nasal drip is gone. I had a lot of fatigue, and that has cleared up, as well as the "brain fog". I had a number of muscle aches and pains that I attributed to getting older, and they are much better too. The Enterolab results confirmed that I was gluten (and soy) sensitive. So even if you don't have GI symptoms, the gluten can be having other negative affects on your body. When you go gluten free, see if other aspects of your health improve.

Rosie

[Gabes-Apg]

Judy

i was negative for celiac on blood tests.
i had been living a life that was gluten free (about 80% of the time) for 10 years or more when I got the MC diagnosis. Based on the advice on this site i went 100% gluten free.

Since then i have been 'glutened' about 4 times. the instant reaction (d within 15 minutes) is justificaiton enough to know that Gluten is not my friend

[Joefnh]

Judy I have tested negative twice for celiac disease, but I did have blunting of the villi noted dueing my biopsies. I am certainly sensitive to gluten and to a modest degree soy and dairy.

I have never taken the Enterolab tests, but my body clearly lets me know what it is reacting to. If I have any gluten I start to have significant muscle and joint pain within 30 minutes and D within an hour.

I have been using a food diary to keep noted on how I tolerate a specific food.

Thanks for asking this question

Take care

--Joe