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I'm Totally Lost. Help Please?

Eli1007

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Eli1007 Apprentice
Eli1007
Posted

Hi guys, I'm having some problems to be diagnosed or not with celiac disease.

 

I think I'll start this from the beginning:

 

Since I was a child I can't eat a lot of things. I'm now diagnosed with ARFID (Avoidant/Restrictive Food Intake Disorder). While almost everyone that I know with ARFID only eats things like mac and cheese, pizza and things that have a lot of carbohydrates (and gluten) I'm just the opposite and can't eat those things. Like, since then I would have this "gross" feeling and fear of vomiting with it, of course, it's not only with those types of food, but everything that is made with a dough is just "ugh gross, won't eat it" to me. And now I'm wondering if it's not only my body sending me signals that actually it will make me sick.

 

Anyway, when I was 18 I started eating pizza, yay but nay, because at that time I think I started getting really bad: diarrhea, bloating, you know those things you get when you eat something you shouldn't. But then in the beginning of last year I was diagnosed with Lactose Intolerance and everything got ok with a lacfree diet, I don't have those symptoms anymore. What happened was that most of the things that I ate with gluten also have lactose: pizza, cakes, cookies and so on. So I basically stoped eating gluten, it's not 100% free; for example, I eat a cookie without lactose and I probably have eaten other things with gluten without knowing it.

 

In the end of last year, I started getting really tired, sleeping too much, I thought I had an anemia and since every year I have to do some blood tests because of my ED I did it. And well, I have deficiencies of B12, D and folic acid. Also my ferritin went in a year from 86 to 25. The B12 is really weird because I mostly eat meat everyday. So yeah I knew and know I have a problem.

 

I just put everything together and went to the doctor. When I asked him if maybe I had celiac disease he told me it was not because I dind't have stomach symptoms (by now I knew he didn't know a thing about celiac disease). I did only the biopsy and when he gave me the result he told me of other things like the gastritis I knew I had already. But about the duodenum he didn't say a thing, only that I didn't have celiac disease. But looking at the exam it says I have an inflamation in it. Ok, it doesn't say anything about those characteristics of someone with celiac disease, but an inflamation is an inflamation, I'm even taking some medicine for this inflamation that I don't have a clue of what is. Also in the exame it says that to have the diagnose it needs a correlation between my body, the endoscopy and my symptoms. So in the end the exame alone couldn't give a diagnose. Isn't it inconclusive instead of negative? And now I'm thinking that maybe since I'm almost not eating gluten it could have get in the way and give this type of result (negative/inconclusive). Is it a thing, even though I'm not 100% gluten free?

 

I have an appointment with another doctor on the 9th but now I'm wondering if I should start eating a lot of gluten (ugh) to do those blood tests or if I should wait and talk to the doctor first. Also any thoughts on my exam result?

 

Ps: I also have migraines and amenorrhea 

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mamaw Community Regular
mamaw
Posted

sounds  like  you  have lots  going  on..... What  type  of  doctor  is  the new one?  You  could ask  the  office  staff  if  the  doc  handles  celiac  before  you go...

If  you  are wanting to be  tested  for  celiac  you need  to be eating gluten  for proper  results.....some  say  two slices  of  bread a day others  including  me  feel more  gluten   before testing....

Plus  there are no  tests at  this  time  for  non celiac gluten sensitivity, that  is  just an elimination  diet....

Eli1007 Apprentice
Eli1007
Posted
  • Author

sounds  like  you  have lots  going  on..... What  type  of  doctor  is  the new one?  You  could ask  the  office  staff  if  the  doc  handles  celiac  before  you go...

If  you  are wanting to be  tested  for  celiac  you need  to be eating gluten  for proper  results.....some  say  two slices  of  bread a day others  including  me  feel more  gluten   before testing....

Plus  there are no  tests at  this  time  for  non celiac gluten sensitivity, that  is  just an elimination  diet....

 

Thank you for answering me. Actually the one on the 9th is a hematologist. I have still another one on the 16th that is a gastroenterologist but I got this one in a celiac website as someone that has knowledge about it. 

 

The problem now is how long I should be eating it, at least a couple of months, right? If I start eating gluten regularly will I have stomach symptoms again?

cyclinglady Grand Master
cyclinglady
Posted

Hi! Here is some information regarding testing from the University of Chicago:

Open Original Shared Link

Open Original Shared Link

Looks like they prefer to see patients who have eaten gluten daily for 12 weeks for both biopsy and blood test.

Unfortunately, your stomach issues will probably return. But getting a diagnosis is important. I have one (dx March 2013), but my husband does not. He went gluten free based on the poor advice of my allergist and his GP 14 years ago. He feels great now, but says that I get way more support from family, friends and medical staff.

It sounds like your doc performed the endo, but did not take samples (biopsy) and that is a shame! I had no visible damage, yet biopsies revealed moderate to severe damage. Anemia was my only symptom at the time. No tummy issues, though my GI wrote down that I had them (I did but only if I ate eggs, dairy or nuts which I have been allergic to most of my life!). I think he did it for insurance approval.

Continue your research and let us know how you are doing. We are here to help!

Eli1007 Apprentice
Eli1007
Posted
  • Author

Thank you cyclinglady! The links helped me a lot. Someone had told me about the genetic exame before but I wasn't sure how useful it would be to the diagnosis.

 

Actually I had the biopsy together with the endoscopy, that's how I know I have an inflammation.

 

I went to my nutricionist today. She had given me the vitamins I am taking now but hadn't seen the blood exams. All this while she was skeptical like "You have all these deficiencies probably because you don't eat a lot of things". She started with it again saying that most people have B12 deficiency (mine is just too low to be a simple deficiency, but whatever). When she went to measure my abdomen she was like "Are you having your period soon or any problems doing the number 2? Because your abdomen is 2 cm bigger", I was just too ashamed to say that I had eaten pizza without cheese the day before. But when she started talking about how celiac people just start bloating when they eat something with gluten I told her and she was kind of shocked, "because they have lots of flatulence" "Exactly what I'm feeling right now". Maybe I do have the stomach issues but never paid attention before. She also agreed that my migraines are probably because of gluten. But she told me that I should reduce gluten even more. I think I will keep eating the way I am rn and see what the doctor says. Maybe having the genetic exam together with all my symptoms are enough to a diagnosis.

 

I feel really supported here, thank you a lot <3

MomBTired Newbie
MomBTired
Posted

Yes, you need to be eating gluten or you could get a negative result when you really are not. I went through this with my son. We didn't know he had celiac disease until a skin disease popped up which was biopsied, then his gastro dr didn't believe it since he had so many normal endoscopies SO he ate a ton of gluten the night before and he was so swollen inside that the scope tore him a little and ended up in the hospital for the night. My only regret was that last gluten meal wasn't his favorite things so I recommend, it be your favorite things the night before

  • 1 month later...
Eli1007 Apprentice
Eli1007
Posted
  • Author

Thank you MomBTired, I hope I don't have to pass through that diet but if I have I'll remember this.

 

So, I went to the new gastro and she's amazing! She listened to me, read all my exams. She told me that even if it's not celiac disease it could still be a autoimmune disease since the problem with vitamins and my period aren't normal at all. I did the antibodies tests, she told me that even without eating gluten daily it still would give an big number even if not positive. TTG-IGA was totally negative with 1.80, the positive one would be from 20 onwards. The gliadin IGA was 7.10, positive would be 12. Autoantibodies was negative. She asked for the genetic test but I had some problems with the health care system so by now I haven't done it. My vitamins are all normal now, I feel a lot better. I'm going to see her this week, but I'm not sure what she is going to get from all these exams, I'm afraid of having to go through another biopsy (she told me that maybe I would have to do it again). 

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