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
Arcolite
Posted

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
skyyblues
Posted

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
ang1e0251
Posted

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.

Go to topic listing

  • 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. Trish G
      - Trish G replied to Trish G's topic in Gluten-Free Foods, Products, Shopping & Medications
      10

      Fiber Supplement

      Thanks, that's a great addition that I hadn't thought of.
    2. trents
      - trents replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      Is this celiac?

      Other diseases, medical conditions, medications and even (for some people) some non-gluten foods can cause villous atrophy. There is also something called refractory celiac disease but it is pretty uncommon.
    3. trents
      - trents replied to kpf's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      15

      ttg iga high (646 mg/dl) other results are normal

      knitty kitty asks a very relevant question. So many people make the mistake of experimenting with the gluten free diet or even a reduced gluten diet soon before getting formally tested.
    4. trents
      - trents replied to Trish G's topic in Gluten-Free Foods, Products, Shopping & Medications
      10

      Fiber Supplement

      Another great fiber option is dried apricots. Four of them give you 3g of fiber and I find they don't produce all the gas that some other high fiber options do. They taste good too. Costco sells a large bag of them that are labeled gluten-free so you don't have to worry about cross contamination issues like you might in bulk grocery settings.
    5. Trish G
      - Trish G replied to Trish G's topic in Gluten-Free Foods, Products, Shopping & Medications
      10

      Fiber Supplement

      Wow, that's alot of info, Thanks!!!! I had my intake with Nutrionist where we went over basics and then will have follow up where we will talk about all the questions I've come up with (including the fiber question and so many more). I'll talk to her about the info you provided as well. Thanks again (newbie here 😀)
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,347
    • Most Online (within 30 mins)
      7,748
    Emhope1107
    Newest Member
    Emhope1107
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      Is this celiac?

      By knitty kitty · Posted

      @Hmart, The reason why your intestinal damage was so severe, yet your tTg IgA was so minimal can be due to cutting back on gluten (and food in general) due to worsening symptoms.  The tTg IgA antibodies are made in the intestines.  While three grams of gluten per day for several weeks are enough to cause gastrointestinal symptoms, ten grams of gluten per day for for several weeks are required to provoke sufficient antibody production so that the antibodies move out of the intestines and into the blood stream where they can be measured in blood tests.  Since you reduced your gluten consumption before testing, the antibody production went down and did not leave the intestines, hence lower than expected tTg IgA.   Still having abdominal pain and other symptoms this far out is indicative of nutritional deficiencies.  With such a severely damaged small intestine, you are not absorbing sufficient nutrients, especially Thiamine Vitamin B 1, so your body us burning stored fat and even breaking down muscle to fuel your body.   Yes, it is a very good idea to supplement with vitamins and minerals during healing.  The eight essential B vitamins are water soluble and easily lost with diarrhea.  The B vitamins all work together interconnectedly, and should be supplemented together.  Taking vitamin supplements provides your body with greater opportunity to absorb them.  Thiamine and the other B vitamins cannot be stored for long, so they must be replenished every day.  Thiamine tends to become depleted first which leads to Gastrointestinal Beriberi, a condition that doctors frequently fail to recognize.  Symptoms of Gastrointestinal Beriberi are abdominal pain and nausea, but neuropathy can also occur, as well as body and joint pain, headaches and more.  Heart rhythm disruptions including tachycardia are classic symptoms of thiamine deficiency.  Heart attack patients are routinely administered thiamine now.   Blood tests for vitamins are notoriously inaccurate.  You can have "normal" blood levels, while tissues and organs are depleted.  Such is the case with Gastrointestinal Beriberi, a thiamine deficiency in the digestive tract.  Eating a diet high in carbohydrates, like rice, starches, and sugar, can further deplete thiamine.  The more carbohydrates one eats, the more thiamine is required per calorie to turn carbs into energy.  Burning stored fats require less thiamine, so in times of thiamine shortage, the body burns fat and muscles instead.  Muscle wasting is a classic symptoms of thiamine deficiency.  A high carbohydrate diet may also promote SIBO and/or Candida infection which can also add to symptoms.  Thiamine is required to keep SIBO and Candida in check.   Thiamine works with Pyridoxine B 6, so if Thiamine is low and can't interact with Pyridoxine, the unused B 6 accumulates and shows up as high.   Look into the Autoimmune Protocol diet.  Dr. Sarah Ballantyne is a Celiac herself.  Her book "The Paleo Approach" has been most helpful to me.  Following the AIP diet made a huge improvement in my symptoms.  Between the AIP diet and correcting nutritional deficiencies, I felt much better after a long struggle with not feeling well.   Do talk to your doctor about Gastrointestinal Beriberi.  Share the article linked below. Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Keep us posted on your progress!
    • Trish G
      Fiber Supplement

      By Trish G · Posted

      Thanks, that's a great addition that I hadn't thought of. 
    • trents
      Is this celiac?

      By trents · Posted

      Other diseases, medical conditions, medications and even (for some people) some non-gluten foods can cause villous atrophy. There is also something called refractory celiac disease but it is pretty uncommon.
    • trents
      ttg iga high (646 mg/dl) other results are normal

      By trents · Posted

      knitty kitty asks a very relevant question. So many people make the mistake of experimenting with the gluten free diet or even a reduced gluten diet soon before getting formally tested.
    • trents
      Fiber Supplement

      By trents · Posted

      Another great fiber option is dried apricots. Four of them give you 3g of fiber and I find they don't produce all the gas that some other high fiber options do. They taste good too. Costco sells a large bag of them that are labeled gluten-free so you don't have to worry about cross contamination issues like you might in bulk grocery settings.
×
×
  • 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.