Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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


kelly123

Recommended Posts

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. 


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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!  

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,101
    • Most Online (within 30 mins)
      7,748

    Danielle Krucker
    Newest Member
    Danielle Krucker
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      69.9k

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
    • CatS
      I understand your frustration about socializing while having celiac disease. I also have allergies to nuts, dairy, all forms of gluten including oats, strawberries and MSG. I get anxiety while grocery shopping and really take my time to read all labels. I always carry a magnifying glass with me wherever I go to read labels. Many products are labelled Gluten Free but contain Oats, and apparently this is becoming more common. I almost bought some gluten free flour but read that it contained oats. A certain percentage of Celiacs have this complication. I can’t help feeling offended and excluded when others act like I am being “high maintenance”. I am becoming better at being an advocate for myself.  I have had diverticulitis 3 times and each time hospitalized-once, the attending nurse didn’t know what celiac means-she had to research...  If others around me make comments I try to enlighten them, those who don’t get it are not my friends anymore. Be very careful about cross-contamination. I was sick recently for 10 days after a meal was contaminated while I was on holiday. If servers say they have gluten free buns or bread, ask if they use a toaster specifically reserved for gluten-free, or don’t chance it. On a positive note, I didn’t find out I had Celiac Disease until I was 60. Eating a gluten free diet means no more terrible headaches, hives, rashes, intestinal bloating and irregularity, Gastro Intestinal Reflux….when I follow a strict diet and mostly always eat at home, I feel great! I also weeded out “friends” who weren’t worth being around.
    • Kwinkle
      Thank you, Trents- are there any safe alternatives?
    • Scott Adams
      I agree with @trents, it's not typical for gluten exposure to cause symptoms as delayed as a week or two after ingestion. In most cases, reactions to gluten occur within hours to a few days, depending on individual sensitivity and how much gluten was consumed. The delayed symptoms you describe—stomach cramping in the mornings and flaky stool—might suggest that something else is contributing to your discomfort. Cross-contamination is a common challenge, especially when dining out, and it's great that you're doing your best to stay gluten-free. However, the inconsistency of your symptoms and the long delay between exposure and reaction could warrant further investigation. It's possible that another gastrointestinal condition, such as IBS, a food intolerance, or a reaction to something else in your diet, might be contributing to your symptoms. You might consider keeping a detailed food and symptom diary to identify potential patterns or triggers. Additionally, consulting your gastroenterologist could provide clarity. They may suggest testing to rule out other issues, such as small intestinal bacterial overgrowth (SIBO), microscopic colitis, or other sensitivities. If you suspect cross-contamination is a significant issue, you could also ask for follow-up bloodwork (e.g., tTG-IgA) to check if your antibodies are elevated, which might indicate ongoing gluten exposure.
    • Scott Adams
      Good to know, here is their website: https://polly-o.com/
×
×
  • Create New...