Jump to content
  • 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

Pre-testing But I'm Willing To Put Money On The Outcome...


Arcolite

Recommended Posts

Arcolite Newbie

Hi, new poster but a long time lurker.

My family and I are currently going through the testing process but we're more or less certain that it's either a extreme wheat allergy or celiac. Only the tests will tell for sure.

My mother and my sister have slightly different symptoms and reactions, to me, but still off the same foods.

Personally I have been suffering with an unknown stomach complaint for the last 8-10 years and despite countless trips to the doctor over those years, not once was celiac or wheat allergy ever mentioned. My mother and sister have had the same expirience with the same doctor.

So far I have had medication for IBS which did nothing, Anti-Depressants (which did help me cope, but didn't stop the symptoms) and lots of counselling which again, helped me cope, but didn't solve anything.

My symptoms range from...

Panic Attacks and Anxiety during bad stomach episodes. I've suffered from Emetophobia since I was tiny but only started getting anxiety and panic attacks when the bad guts started.

I have been Underweight since I can remember and no matter what I eat I cannot put on weight. I have very little energy and feel cold most of the time.

Before I started the wheat free diet I used to get very bloated and my stomach is was always tender and uncomfortable to touch.

My BM was irregular and quite often loose. The doctor used to link this with IBS, but it could also celiac.

I can always tell when I'm about to have a reaction to something I've eaten because I get very tired and irritable after eating, my stomach tenses up in a knot and I get very flushed in the face followed by cold chills and cramps. If the reaction is bad I'll end up with anxiety and panic attacks then being off food for the next day and my BM will be loose and shall we say "toxic".

I'm not a gambling man, but as all the IBS and anxiety stuff didn't fix the problem, Celiac is looking a pretty good bet right now.

When I read the sypmtoms for the first time it was like a tick sheet.

Why did the doctors never think to check for this sooner? Thesame doctor missed it not just once, but with three different people with similar complaints (Mum and Sister) :(


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



Celiac.com Sponsor (A8-M):



skyyblues Newbie

Hello - I can relate.... I have had stomach problems as long as I can remember but just thought it was just me. I have an Aunt that is the same way. I have had horrible rashes and exzema for the last 2 2/1yrs. Doc after doc has either treated me as nuts or shoved prednisone on me. I have been to regular docs, dermatologists, allergists, and none of them had ever suggested anything other than steroids and more itch pills. I happen to go to my "new" regular doc a month ago when I was having a semi bad breakout and he looked at me and said "Has anyone ever tested for Celiac Sprue?" I was like what??? He did a blood test - negative- not suprised as have been on steroids since last Nov. I looked up Celiacs and thought wow! I have been gluten free for 2 weeks and have not felt this good ever! I can eat without having to know where the bathroom is.... I had one very bad reaction out of town - ER and all - so when I came back my doc suggested a endoscopy to confirm. I knew I would have to go back to eating "it" in order for the test to be done. I went for my consult today and cried when I agreed to eat "regular" again for 4 weeks. I went out to dinner tonight and I am already starting to break out. I am not sure if I will make it but will try. I have both a endoscopy and colonoscopy scheduled to confirm Celiacs and/or rule out anything else. They took 6 vials of blood today to run a bunch of other tests as well. I can't believe I have finally found 2 doctors who care enough to look a little further and actually try to find out what is wrong.

Well I have rambled long enough. Time for an itch pill and bed. I am scared to wake up tomorrow and see what I look like... :( ........Good Luck to you and let me know how everything works out. I can tell you one thing though no matter what they find in my tests I am going back to gluten free as soon as this h--- is over!!!!

ang1e0251 Contributor

Welcome and I'm sorry you are feeling so crappy. Hang in there for your testing. I think I would call the GI office every day and ask if they have any cancellations so you could move the time of your test up.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to Matthias's topic in Coping with Celiac Disease
      1

      Unexpected gluten exposure risk from cultivated mushrooms

    2. - Matthias posted a topic in Coping with Celiac Disease
      1

      Unexpected gluten exposure risk from cultivated mushrooms

    3. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      how much gluten do I need to eat before blood tests?

    4. - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

    5. - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,324
    • Most Online (within 30 mins)
      7,748

    mao5617
    Newest Member
    mao5617
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • trents
      Welcome to the celiac.com communiuty, @Matthias! Yes, we have been aware that this can be an issue with mushrooms but as long as they are rinsed thoroughly it should not be a problem since the mushrooms don't actually incorporate the gluten into their cellular structure. For the same reason, one needs to be careful when buying aged cheeses and products containing yeast because of the fact that they are sometimes cultured on gluten-containing substrate.
    • Matthias
      The one kind of food I had been buying and eating without any worry for hidden gluten were unprocessed veggies. Well, yesterday I discovered yet another pitfall: cultivated mushrooms. I tried some new ones, Shimeji to be precise (used in many asian soup and rice dishes). Later, at home, I was taking a closer look at the product: the mushrooms were growing from a visible layer of shredded cereals that had not been removed. After a quick web research I learned that these mushrooms are commonly cultivated on a cereal-based medium like wheat bran. I hope that info his helpful to someone.
    • trents
      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.