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Need help: symptoms of gluten allergy/celiac but I have no idea//miserable


kelly123

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kelly123 Newbie

Hey, I'm new on here but I've been having symptoms for about 2 years now and I am 15 years old. My stomach pain has been getting worse in the past few months and is way more frequent. I have no idea what it is but my Mom and I have been trying to figure it out but we just can't. My pain is mostly in the upper stomach near the ribs but goes down the sides as well. I have tried lots of things to help it including slippery elm, apple cider vinegar in some juice, and ginger tea. I have to take Pepto Bismol 2-3 times a day and I can't take it anymore. I have tracked lots of my symptoms including joint pain and headaches to Celiac but I don't have any family history. I went to the GI specialist recently and had bloodwork and one of the four parts of the Celiac test was positive(I don't know which one) but the doctor said that part is unreliable and commonly has false positives. He said he thinks it is gastritis and gave me Prilosec which I have been taking for the past two weeks and can't tell if it did anything. I have also been trying to go gluten free to see if that helps. I did it for about a week, just eating bland foods and I saw an improvement. But, I have slipped up a few times and my stomach began to hurt a lot again. I have a lot of nausea and alternating between constipation and runny kind of bowel movements. Do my symptoms sound like celiac? I really need help it affects my daily life and prevents me from doing things. 


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tessa25 Rising Star

You should get copies of your test results. It only takes one positive on the blood tests to lead to an endoscopy/biopsies being done to confirm celiac. If you were only a few points over the normal range then I could see a false positive (not a doc).

 full celiac panel includes:

TTG IGA
TTG IGG
DGP IGA
DGP IGG
EMA
IGA

You have to be eating gluten daily for 12 weeks before the blood test.

When you get your test results, if any of the above tests are missing then I would get them done if it were me. And I'd get a gastroenterologist to do the endoscopy/biopsies (again not a doc).

In the meantime, what works for gastritis with me is chicken soup, potato chips, water and ice cream (dairy doesn't bother me). Toast is good as well. But I don't eat/drink anything else until the gastritis is gone. And that can take weeks.

 

Ennis-TX Grand Master

As mentioned above I would get the full panel of test and the biopsy to confirm and keep eating gluten daily til then.....going off gluten then having to reintroduce it later for testing makes it MUCH worse. Open Original Shared Link

 

Feel free to post your test here if you need help interpreting results....not many doctors are celiac savy.

sanjlika Newbie

I would go strictly gluten free for some time and see the symptoms, in my case I did after getting a confirmation from blood work but believe you me the symptoms greatly declined after I went gluten free. The only issue I faced now is that when ever I get mistakenly glutened my reactions are more severe than before and I am still messing up and getting glutened cause it’s been only 2 weeks I have been diagnosed.

kelly123 Newbie

Yeah I am trying going gluten free it’s only been a week so far but I don’t see any improvement so far, in fact I think it’s getting worse. I have an appointment with my GI doctor next Thursday so I will update on what happens. I’m literally so miserable and I  hate it so much:(

cyclinglady Grand Master
2 hours ago, kelly123 said:

Yeah I am trying going gluten free it’s only been a week so far but I don’t see any improvement so far, in fact I think it’s getting worse. I have an appointment with my GI doctor next Thursday so I will update on what happens. I’m literally so miserable and I  hate it so much:(

If you have celiac disease, it can takes weeks to months to over a year for your antibodies to stop attacking you after starting the gluten free diet.  Celiac disease is not an allergy.    You said you had one positive on the celiac panel.  I can tell you I had just one positive and my biopsies (via an endoscopy) revealed some pretty severe damage.  

I hope your GI can provide some answers!  

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      Hi @KathyR37 and a very warm welcome here.  I am so very sorry that you are going through all of this. I just wanted to check, have you ever been tested for any other gastrointestinal conditions? Cristiana  
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