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Tests After Avoiding Most Gluten..?

wystearya

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wystearya Rookie
wystearya
Posted

I'm going to give a little background information here in hopes that I can make the most out of my upcoming Doctor appointment.

 

About a year ago I went to see my doctor thinking I may have IBS.  After speaking with her she told me to try a gluten free diet.  No tests were done.

 

After another week of being stubborn, I finally tried cutting out the obvious sources of gluten.   I felt much better!  Still, no tests were done.  It was assumed I was not celiac, "just gluten sensitive".

 

Fast forward to today:

 

I've been reading more and found out that I used to get DH.  I had a bad gluten reaction two weeks ago.  And I feel like I am reacting to even trace amounts now.  I still get diarrhea more often than is normal.

 

-------------

 

I have an appointment this Monday morning.

 

Are there any tests I should request?  

Would they be accurate with me avoiding most (if not all) gluten? 

 

I am afraid to eat gluten on purpose anymore.  I really don't want to do the test that requires eating it for weeks.  I can't be sick that long.  Though I can't say I have been 100% gluten free.  I have avoided the obvious sources, but not eliminated cross contamination or trace amounts as ingredients in prepackaged foods, sauces, spices, etc.

 

I guess I might not be celiac, but I know I feel a lot better when I avoid gluten!  It cured my bowel symptoms quickly when I first started.  But now it just seems like I am getting ill often.  I think it is from CC and small amounts of gluten in prepackaged foods.  I guess the only way to know is to see my doctor, which is why I have made the appointment.

 

----

 

Thanks for reading!

 

 

 

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1desperateladysaved Proficient
1desperateladysaved
Posted

You might try checking nutrient levels like vitamin D, Vitamin B, magnesium, and complete iron count.  You may learn of more you could test, I don't know all of them.  If you have a good diet, but they are low, it might tell you something.  You would also have a base level, so when you go completely gluten free you could make comparisons.

 

Since, you have been part time gluten free you probably would be negative for the antibodies.  You may want to chance the test without eating more  hoping that you have had enough and it would be positive.  (I am not sure that anyone else would feel that way especially if they needed to pay for the test themselvesf.) During my diagnosis I thought it would be unethical for me to go back on gluten for testing, so I can understand not wanting to.

.

 

D

wystearya Rookie
wystearya
Posted
  • Author

Yes, I just don't want to risk getting sick for a test!

 

I am going to see what the doctor thinks, but I am hoping to get the genetic test as well as thyroid functions.  I'll be sure to mention nutrients too!

 

Thank you!

notme Experienced
notme
Posted

Yes, I just don't want to risk getting sick for a test!

 

I am going to see what the doctor thinks, but I am hoping to get the genetic test as well as thyroid functions.  I'll be sure to mention nutrients too!

 

Thank you!

this is what drives me crazy - and it happened to me, too - my gp says 'maybe you have celiac disease.  try a gluten-free diet and see if you feel better'  well, of course i DID feel better and since i started putting weight on almost immediately (i was so malnourished i was starving to death, literally) my gi didn't want to risk putting me back on gluten, so of course my blood test came back negative.  good thing my guts were so damaged she could see it on the endoscopy.  ha ha.  <not <_<

 

i just wonder WHY, if they suspect celiac, they don't do the blood test BEFORE they tell you to quit eating what they're going to test for~!  arghh - it's probably something to do with insurance protocol..................

greenbeanie Enthusiast
greenbeanie
Posted

I had a similar story, wystearya. After many tries with different rotation diets and conflicting allergy test results, I eventually realized on my own that most of my problems were much worse after eating gluten. I'd tried wheat-free diets before but was still cooking with barley, so I never had a totally gluten-free diet before last spring. Decades of diarrhea and years of night sweats and other problems improved within days of going strictly gluten free, but then I started reacting to even trace amounts in a much worse way than before. I'd been gluten-light for over a decade (not suspecting celiac, just knowing I felt sick after eating bread and pasta), so I had to do a six-week gluten challenge before testing. An accurate diagnosis was important to me at the time because I also suspected that my young daughter had celiac and I was having trouble getting doctors to test her. Fortunately, she had clear positive tests and started doing much better once diagnosed. My own blood tests and biopsy were negative, and I guess I'll never know whether I really have NCGI rather than celiac or whether I just wasn't eating enough gluten for it to make the tests positive. 

 

Anyhow, it sounds like you're going about this in a sensible way, and that you don't want to make yourself sick needlessly. For what it's worth, I would urge you to be really careful if you decide to eat more gluten for testing and start to have a really bad reaction to it. My gluten challenge was miserable - hair started falling out, night sweats every single night, diarrhea ten times a day, etc. Most of that stopped shortly after going gluten free again, but I was left with a really swollen tongue that's still enlarged enough to make me slur my speech sometimes, even months later. I hadn't been particularly concerned about the tongue when it started swelling during the challenge, since everything else was wacky too and I figured it would go away afterward. But it hasn't. Fortunately, tests have ruled out dangerous problems like tumors and severe vitamin deficiencies, and it's improving slowly now, so it will probably just heal itself with time. But I sure never would have put myself through that if I'd know how much of a setback it would be!

 

Good luck with your doctor's visit, and I hope you get some answers soon. 

wystearya Rookie
wystearya
Posted
  • Author

Thank you both!

 

I'm hopeful my doctor won't push me to do the gluten challenge test.  She has been reasonable and generally knowledgeable.  Though the lack of testing when she initially suggested I go gluten free bugs me...

 

Anyway, I will keep this updated!

 

-----

 

I actually kind of hope they do find damage if I get the endoscopy.  I don't want to drink the barium for nothing.  :P  That and I would like some confirmation of my own strong suspicions.  

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