Going Back On The Gluten Diet..

[HollyH]

I was diagnosed with a positive blood test in June of 2007. I have been on the gluten-free diet ever since. Now..they are suspecting that I have Crohns too, and want to make sure that I truly do have Celiac also. I will be having an endoscopy in two weeks, which the Dr. says is enough time if I eat gluten to get a diagnosis.

I am uneasy about starting this up again, but feel that I must. I can't help but picture how I used to feel before I stopped eating gluten. I still must go to work each day in the mean time and try to act like a normal person.

Any tips? How much of the poison am I going to have to eat? I almost wish I could take a pill of gluten instead. So I won't have to think about it as much.

[CDFAMILY]

Hi Holly,

May I ask what blood test you had that was positive. Even if you have Crohn's, I would sincerely wonder about stopping the gluten free diet. I have a good friend who was dx with Crohn's and asked the doctor if a gluten-free diet would help...Doc said absolutely not...he not only went gluten free but did the SCD diet and was able to go off all meds. He completely healed on this diet.

I also know of another person, but not real well, who was diagnosed with Celiac first. Years later the doctor said she does not have Celiac but Crohns. She went off the gluten-free diet and went on meds. She now has Cancer. Is going off the diet related???? I do not know. I would do a lot of reading in the next couple of weeks.

If you feel good on the gluten-free diet, why would you stop it....doctors do not know everything. Two weeks is not enough time to show villous atrophy. I think one of the main Celiac Doctors talks about 3-6 months...I will have to look that up as I forget but I know 2 weeks is not enough.

What symptoms are you having. Have you eliminated milk/casien also? Are you a gluten free home?

[HollyH]

I tested 3 out of four (i think..) on the Celiac Panel. For about a year everything was fine on my gluten-free diet. Then suddenly I became very ill with fever, diarrhea, bloating and pain the lower right quadrant. They thought initially that I had appendicitis so they gave me a cat scan, and it revealed inflammation in my ileum. I wrote it off as a fluke until a year later when it happened again. I have now had a colonoscopy that revealed only 1 ulcer on my ileum. The next step to diagnose Crohns is an endo so I figure I would like to know the truth about the Celiac either way.

I am mostly a gluten free home, I am very careful about what I eat, and what it has been around or touched. I don't think milk could be to blame for the problem, but I could be wrong. I find all of this to be very confusing! The Doctors I have been to, for the most part aren't helpful.

I have struggled with the issue of whether to eat gluten or not since December and decided that I would really like to know the truth.

You are right..I dont know if I would eat a gluten diet even if they tell me I don't have it. I just worry about getting proper nutrition.

[CDFAMILY]

Milk can be a big part of healing for some people. You have continuing inflammation so the next step would be to figure out what is causing it.

If you had 3 of 4 tests positive, I might assume it was the Gliadin Antibody IgA and IgG and maybe the tTG IgA. If the tTG IgA was positive, I see no reason for you to put yourself thru such misery as many doctors and probably all researchers view a positive tTG IgA as a positive Celiac test especially with the positive Gliadins. If one of the tests was a positive EMA then there is no doubt that 99% of doctors would give you a positive Celiac dx. You already had a positive reaction removing gluten so why in heavens name would they want you to reinjure yourself????

To me it is like telling a type 1 diabetic to go off insulin to see if he goes into insulin shock....just to make sure his blood work really was correct in diagnosing diabetes.

Have you been checked for H Pylorie? How about a complete Vitamin workup?