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How Were You Diagnosed?


Guest BERNESES

How were you diagnosed?  

You do not have permission to vote in this poll, or see the poll results. Please sign in or register to vote in this poll.

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Guest BERNESES

1. Bloodwork

2. Biopsy

3. Gene test

4. Positive response to diet only


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elonwy Enthusiast

1. Positive Bloodwork

2. Inconclusive Biopsy

3. No gene test

4. Positive dietary response

Guest BERNESES

Just curious. Thanks everyone, B

gf4life Enthusiast

The poll isn't working, so I'll just post:

1 Negative blookwork

2 Negative biopsy

3 Positive gene test

4 Positive dietary response

I also was positive on the Enterolab stool tests. I had been gluten free before the blood tests and biopsy and don't think they were accurate. Not to mention that I get severely ill for weeks following accidental gluten exposure!

CMCM Rising Star
1. Bloodwork

2. Biopsy

3. Gene test

4. Positive response to diet only

1. Very positive response to diet.

2. Stool test

3. Gene test

KaitiUSA Enthusiast

1.Positive Blood Work

2.Positive Gene Test(DQ2)

3.Positive Response to Diet

carriecraig Enthusiast

Positive bloodwork

Positive biopsy


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Canadian Karen Community Regular

Positive bloodwork followed by positive biopsy

Karen

dlp252 Apprentice

I didn't actually vote using the buttons, because I don't seem to fit the categories, lol.

I was actually "diagnosed" by Enterlab as Gluten Intolerant and Casein Intolerant. I have seen positive response to the diet and have one of the main genes predisposing one to Celiac (along with any number of stressful events in recent years to act as a trigger), so I have put the pieces together myself.

jenvan Collaborator

positive bloodwork, positive biopsy

2Boys4Me Enthusiast

My son was diagnosed by positive bloodwork and positive biopsy.

I cannot say that there has been a positive dietary response. He has gained 2 lbs in the last five months and seems a bit happier, but certainly still has crazy mood swings (occasionally brought on by having a big brother who likes to push his buttons). He had no "obvious" symptoms from consuming gluten. He was only tested for Celiac because of low iron levels, and the liquid iron wasn't really bringing his levels up. He is the only one in our immediate family with Celiac, and of our extended family only my Mom was tested, and she doesn't have it either.

codetalker Contributor

Biopsy and positive response to a gluten-free diet when I was a baby. Then at about age 4, the doctors thought I had outgrown it so they put me back on a regular diet. For the next 35 years, no one ever told me I had been DX'd with celiac disease.

In my 40's, I finally figured out what celiac disease was and started the diet on my own. Don't know if that counts as a second DX or not.

Guest BERNESES

Thanks for all your responses. Don't know why I can't figure out the new poll function. Best, B

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      @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
      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      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
      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
      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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