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
      128,001
    • Most Online (within 30 mins)
      7,748

    Sharon AJ
    Newest Member
    Sharon AJ
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.6k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Bebygirl01
      On my Celiac journey and discovered I was also reacting to other types of gluten. The FDA in it's finite wisdom only classifies 'wheat, barley and rye' as the gluten's to be considered when a company tests for and stamps their products as gluten free. I am curious as to how many of you are aware of the other types of glutens? And another question to those on a 'traditional' gluten free diet , who are also still sick and struggling, are you also reacting to these other types of gluten as listed below? NOTE:  The new movement if you want to call it that, is now called 'grain free' and that is the true definition of gluten free. I no longer suffer with ataxia, confusion, anxiety, depression, OCD, Insomnia, ADD, acid reflux, dermatitis herpetiformis, migraines, headaches, and weight issues all due to going 'grain free'. I hope to reach as many of you out there that are still struggling and unaware of what might be setting you off such as my most recent glutening was from a vegan supplement that contained 'magnesium sterate' and 'glucose syrup' both of which are from Zien (zane) gluten at 55%. I was covered in sores that were bleeding, I was seeing squigly lines when I was trying to drive, had acid reflux, insomnia, and nightmares all from the gluten in Corn. Here are the other types of glutens that Celiacs and Gluten Intolerant people also react to: Wheat -Alpha Gliadin Gluten- 69% Rye - Secalinin gluten-30-50% Oats-Avenin gluten -16% Barley-Hordein Gluten -46-52% Millet-Panicin Gluten-40% Corn-Zien Gluten -55% Rice-Orzenin Gluten-5% Sorghum-Kafirin gluten-52% and Teff-Penniseiten Gluten 11%.
    • Scott Adams
      I just want to mention again that IF thimerosal is used in a flu vaccine the amount of ethylmercury in a single vaccine dose would be extremely small, typically around 25 micrograms (µg) or less. For context, this is much lower than the levels of methylmercury found in some seafood. Ethylmercury is metabolized and excreted from the body much faster than methylmercury. Its half-life in the blood is about 7 days, compared to methylmercury, which can persist for months. The dose of ethylmercury in vaccines is far below the threshold known to cause toxicity so would not require chelation.
    • knitty kitty
      If you have poor reactions to vaccines, preservatives, sugar alcohols and metals, you may be deficient in Thiamine Vitamin B1.  Thiamine is needed in the immune response and production of antibodies.  Thiamine can be depleted by vaccines if you are already low to begin with due to the Malabsorption of Celiac Disease.  Thiamine can be destroyed by sulfide preservatives in vaccines, which can result in the body's poor response to vaccines.  Thiamine also chelates metals which allows those metals to be removed in the feces.  Chelation removes thiamine from the body, resulting in a state of thiamine deficiency.  Sugar alcohols need to be processed through the liver using thiamine.  Again, if you're low in thiamine as many Celiac are because of the Malabsorption of celiac disease, vaccines can be a tipping point, resulting in a thiamine deficient state. High doses of Thiamine required to correct thiamine deficiency states are safe and nontoxic.  Thiamine has no toxicity level.  Thiamine and the other B vitamins need to be taken together because they interact together to sustain health.   References: https://pubmed.ncbi.nlm.nih.gov/25542071/ https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/
    • knitty kitty
      @Pasballard, Keep in mind those gluten free processed snacks are not required to have vitamins and minerals added to them to replace vitamins lost in processing like gluten containing products.   We need the eight essential B vitamins to turn those carbs into energy to fuel our bodies and make enzymes that sustain life.  Sudden weight gain (or weight loss) can be symptomatic of Thiamine Vitamin B1 deficiency.  Thiamine is the B vitamin with the shortest storage time, and so  thiamine deficiency shows up first with vague symptoms like weight gain or loss, fatigue, not sleeping well, achy or cramping muscles, digestive issues and headaches.   Taking vitamin and mineral supplements helps boost your body's ability to absorb these nutrients which keeps our bodies healthy.  B Complex vitamins and Vitamin D (which regulates inflammation) are usually low in people with Celiac disease.  Talk to your doctor and nutritionist about supplementing.
    • knitty kitty
      Welcome to the forum, @WildFlower1, Here's an article that explains about the updated gluten challenge guidelines.  Be sure to read the comments below the article. Have you been checked for nutritional deficiencies?  Low iron can affect antibody production, causing false negatives on antibody testing.  Do you currently struggle with low iron?   Low Vitamin D can cause amenorrhea, cessation of menstrual periods.   Correcting nutritional deficiencies is a big part of Celiac disease.  We don't absorb well the eight essential B vitamins and other vitamins and minerals like calcium, resulting in osteopenia, hair loss, infertility, and neurological symptoms.  Unfortunately, doctors are not given much training in nutritional deficiencies and don't recognize the connection with the malabsorption of Celiac disease. We get very frustrated here with doctors ordering us to put a harmful substance in our bodies in order for them to say "that makes you sick".   Duh, we know that already. Do try to increase your consumption of gluten for at least two weeks before retesting.  Eat the chewy kinds of breads.  Cookies and cakes don't have as much gluten in them as those chewy artisan breads and thick pizza crusts. I admire your tenacity at continuing the gluten challenge.  Do keep us posted on your progress.  We'll continue to support you on your journey to diagnosis and recovery.
×
×
  • Create New...