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Hello, I am new to this forum. I will try to keep things as simple as possible.

I am not 100% sure about my diagnosis, but I had a celiac disease panel done, and my TTG IGA was positive; everything else was negative. My practitioner called and said that I did not have celiac disease, but that I was definitely gluten intolerant, and to follow a gluten free lifestyle as best I can and that was it.

So for the last month I have been trying to learn all this information and get rid of gluten in my diet, which has been quite overwhelming! My practitioner had said 4 - 6 weeks and I should be feeling much better and less fatigued.

However, I am not feeling much better. My GI issues are better, but I still have trouble from time to time with nausea and diarrhea, and sometimes severe stomach cramping - and I am still sleepy, tired and fatigued all the time.

Is this normal? Will it ever go away or get better? Since she doesn't seem to think I have celiac disease (which I am not 100% sure about but not sure what else to do) it seems like if it is not actual damaging my body it might be easier to go back to gluten since I don't feel tremendously better.

Any help is much appreciated!!! :)

Thanks!

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Your doctor is woefully mis-informed.  It only takes only one positive out of the complete celiac panel to warrant a referral to a GI doctor.  You doctor is not following celiac disease diagnostic protocol.  

http://www.mayomedicallaboratories.com/it-mmfiles/Celiac_Disease_Diagnostic_Testing_Algorithm.pdf

here is more about testing and diagnosing celiac disease:

http://www.cureceliacdisease.org/screening/

Because you are gluten free, you would have to get back on gluten for 2 to 4 weeks.  

BTW, celiacs can months to years to heal.  A few weeks can help, but it is a long process to heal, especially for adults.  Why?  Huge learning curve for the diet and damage can vary.  

In any case, I think a new doctor might be in order.  Maybe he or she could be missing something else (not celiac disease related).    I mean, the celiac disease diagnostic data is on the Internet.  Surely, if he is not knowledgeable about celiac disease, he should do a little research?  That is what my ER neighbor doctor does as he can not know everything!!!!

Hope this helps!  

Edited by cyclinglady

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It will get better.  The body is just getting started on a healing and detoxing process both at the same time.  The body has been used to coping with the gluten your system, so it will take a while for symptoms to improve.  It is a long term process.  The longer you go gluten-free, the more and more you will feel better and the more good days you'll have than bad. If you accidentally get glutened, your body will kick it back out the easiest way possible, so be prepared for all of the sudden of an increased severity in symptoms.

As you let your body heal, get plenty of rest, drink lots of water, and try to eat as natural foods as possible.  The less processed foods, the better for your body.  Essentially, your body has been ill for a long time so it needs the stamina and nutrients to recover from the illness.  You don't have to this, but what I did is I became a rabbit eating meat, veggies, and very little fruit for about a couple of months or so to reset my body.  I still eat meat, fruits, and veggies for the most part to this day.  I do of course, slip in the high calorie food now and then. :) Everybody needs a treat.  Any way, I also have very little dairy as this does not seem to like my digestive system as much any more.

Aloe Vera juice is also supposed to be good for the digestion.  If you like Aloe Vera juice or are interested in drinking the stuff, I found a brand that is gluten free but has a great taste to it.  It's called ALO.  You can find it in the organic section of grocery stores or buy it online.

 

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