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

Arcolite

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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) :(

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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.

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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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