Celiac or not?

I have Colitis, IBS and tested negative for Celiac.  The doctor felt I might be gluten intolerant and so I went on a GF diet.  I had bloating, doubling over pain in my belly and extreme fatigue.  Now if I strictly follow the diet I am much better.  If I slip, I pay for it.  I don't slip often, and when I do, I am finding I can recover in about a day or so.  Overall though, it has definitely made a difference.

We were on holiday a couple of weeks ago and it was difficult finding the right foods in restaurants.  I stuck to grilled shrimp without sauces, plain baked potatoes and grilled salmon.  Trust me, it was hard watching others eat what I really wanted.  Breakfast was the most difficult.  I nibbled on some orange slices, one egg and bacon.  Still got some tummy pain, but not what it could have been.

Eating out is difficult, gee... eating in is difficult.  What I really want is a juicy, greasy hamburger, fries and onion rings.  Instead I'll have some rice noodles and shrimp.

Good luck.

darren mccleery said...
i have had crohns disease for 10 years i have been on remicade and imuran for the last 3 years. i had tests done for celiac disease,the blood tests were positive and the stomach biopsis were negitive so my consultant said i dont have it and has not put me on a gluten free diet, but i decided to go on to a gluten free diet my self because gluten was making me feel tired and sleepy.does anybody know if they think i am celiac or just cant tolerate gluten.i am going on holiday and i cant see me sticking to a gluten free diet . should i be worried or will i be alright because i am taking drugs that supress my imunsystem anyway.

Hi Darren,

If your blood tests were positive but your biopsy was negative you still have celiac, IMHO. BTW, they should NOT have biopsied your stomach...the biopsies are supposed to come from the small intestine. Of course, I assume that your doctor knows this.

What you need to know is that both the blood tests and the biopsies give LOTS of false negatives; here is a great explanation as to why there are so many false negatives from the biopsies (from another celiac forum):

A negative biopsy really doesn't prove much.

A number of samples are taken from the lining of the upper small intestine. The number is usually rather small. The damage may be spotty in many cases.

An analogy which may help understand the accuracy of the biopsy follows. It is graphic, but effective.

Imagine that your front lawn is 25 feet wide and 10 feet deep. That is 250 square feet of grass. Now imagine that you go onto your lawn and choose, at random, 12 3-inch square samples. In none of those samples, which total less than 1 square foot out of 250, do you find any dog feces. Well, then, you can declare that your lawn is free of dog poo, can't you? Of course you can't.

A negative on the biopsy does not prove that there is no damage, it only means that they did not find any in the small sample. The fewer samples taken, the more likely it is that damage will be missed. Most times a lot less than twelve samples are taken, and they are all taken from within the first few inches of the small bowel.

In any case, if you have celiac disease, you MUST follow the gluten free diet....it's the only real treatment for it. Celiac disease, if untreated, can actually lead to many other illnesses, including other autoimmune diseases and even bowel cancer. Just because you're on immunosuppressants does not mean you will be OK eating gluten.

If you go to my blog (see signature) you can read about our recent vacation in Oregon and how we stayed gluten free while traveling (my entire family is gluten sensitive so we are all gluten free).

Good luck!
JoAnn

I just re-read your original post...must have mis-read the first time because I missed positive celiac blood tests.

Celiac can be very difficult to diagnose. Although there are many false negatives in blood and endoscopy -- positive blood tests are rarely incorrect.

I would strongly recommend you go stay gluten free to see if you improve.
I'd suggest you get another tTG IgA drawn at 3 and 6 months to see confirm the diet is working as some (like me) take longer to heal their intestines which can be confused with the diet not working.

Both celiac and nutrient blood tests all improved at both 3 and 6 months gluten-free for me.