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How Were You Diagnosed?

Guest BERNESES

By Guest BERNESES
in Celiac Disease Pre-Diagnosis, Testing & Symptoms

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
Guest BERNESES
Posted

1. Bloodwork

2. Biopsy

3. Gene test

4. Positive response to diet only

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elonwy Enthusiast
elonwy
Posted

1. Positive Bloodwork

2. Inconclusive Biopsy

3. No gene test

4. Positive dietary response

Guest BERNESES
Guest BERNESES
Posted

Just curious. Thanks everyone, B

gf4life Enthusiast
gf4life
Posted

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
CMCM
Posted
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
KaitiUSA
Posted

1.Positive Blood Work

2.Positive Gene Test(DQ2)

3.Positive Response to Diet

carriecraig Enthusiast
carriecraig
Posted

Positive bloodwork

Positive biopsy

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Canadian Karen Community Regular
Canadian Karen
Posted

Positive bloodwork followed by positive biopsy

Karen

dlp252 Apprentice
dlp252
Posted

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
jenvan
Posted

positive bloodwork, positive biopsy

2Boys4Me Enthusiast
2Boys4Me
Posted

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
codetalker
Posted

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
Guest BERNESES
Posted

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

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  • Posts

    • FayeBr
      Corn reaction and ataxia

      By FayeBr · Posted

      Hi all. I was diagnosed 3 years ago after suffering for many years of misdiagnosis. There are a couple of things I’d like to ask. The first is about corn. Do you react to it like gluten. My dietician told me that corn should never be a problem for me and suggested probiotics with corn starch and other corn ingredients in. I had stayed away from corn for 2 years beforehand and should have trusted my gut (no pun intended) because after 2 capsules, I have had the worst reaction for a long time. All the usual gut problems (pain and D) migraine, fatigue, aches and pain, tinnitus etc etc. (I could go on) Does anyone else react to corn like this?  Also, for years now I have been going downhill with my health neurologically. I have to now walk with a stick as I have big  balance issues, I fall, I have numbness in legs and pins and needles. I feel like I can’t control my body with movements. They have said possible MS, fibromyalgia, ME etc etc. But my dietician has said it’s classic gluten ataxia symptoms and to see a professor here in the UK who specialises in this field. Does anyone else have this and what symptoms do you have? Thank you 
    • knitty kitty
      How many people here are aware that there are 9 types of gluten that Celiacs should be aware of?

      By knitty kitty · Posted

      Lectins are carbohydrate storage proteins.  Different plants have different lectins.  Gluten is a lectin, but not all lectins are gluten.   Lectins are made up of a protein "spine" with a bunch of carbohydrate molecules stuck to it.  During digestion, the carbohydrates get pulled off, but that protein "spine" can get stuck to cell membranes.  In Celiac, our immunity kicks on when exposed to gluten.  Gluten is made up of a string of polypeptides.  One particular segment in that string, the 33-mer segment, triggers our built-in celiac immunity to produce antibodies against it when it sticks to HLA DQ genes.  Unfortunately, our body makes tissue transglutaminase, used in cell membranes as support structures, which also contains segments of that 33-mer polypeptide.  The anti-tissue transglutaminase antibodies (ttg antibodies) attack the tissue transglutaminase on our cell surfaces, as well as the gluten in celiac disease.   In acquired immunity - our body gets sick once, learns to produce antibodies against the thing causing the illness, and "remembers" so it can make more antibodies against it if it's encountered again.   Our body can "learn" to attack those protein "spines" of lectins that may be stuck to cell surfaces.  To lessen the probability that the body will "learn" to attack other lectins in addition to the gluten lectin, avoiding all grains while the immune system is reacting to gluten is a great idea.   Lectins can be irritating to the gastrointestinal system.   Lectins can stimulate IgE (allergic) reactions.  Lectins can cause mast cells to release histamine. Lectins can be difficult to digest.  Lectins can be fermented by gastrointestinal bacteria and yeasts, causing gas, bloating and diarrhea or constipation.  Small Intestinal Bacterial Overgrowth and Candida overgrowth both have symptoms similar to Celiac Disease.  Corn lectins are more apt to be problematic than most other lectins.   Avoiding lectins in the early stages of going gluten free can help reduce other gastrointestinal symptoms and speed up recovery. I have a horrible response to corn, maize, zein.  I break out with Dermatitis Herpetiformis blisters if I consume corn or products made with corn derivatives.   But, there's no gluten in corn or other grains.  Gluten and that 33-mer polypeptide are only in barley, wheat and rye.  And some breeds of oats.   Try a low histamine, low carbohydrate, low Fodmap, grain free, Paleo diet like the Autoimmune Protocol Diet to see how much better you can feel.   It's not always gluten; the immune response is just going crazy.   https://pmc.ncbi.nlm.nih.gov/articles/PMC1115436/
    • knitty kitty
      Oats gluten free?

      By knitty kitty · Posted

      Lectins are carbohydrate storage proteins.  Different plants have different lectins.  Gluten is a lectin, but not all lectins are gluten.   Lectins are made up of a protein "spine" with a bunch of carbohydrate molecules stuck to it.  During digestion, the carbohydrates get pulled off, but that protein "spine" can get stuck to cell membranes.  In Celiac, our immunity kicks on when exposed to gluten.  Gluten is made up of a string of polypeptides.  One particular segment in that string, the 33-mer segment, triggers our built-in celiac immunity to produce antibodies against it when it sticks to HLA DQ genes.  Unfortunately, our body makes tissue transglutaminase, used in cell membranes as support structures, which also contains segments of that 33-mer polypeptide.  The anti-tissue transglutaminase antibodies (ttg antibodies) attack the tissue transglutaminase on our cell surfaces, as well as the gluten in celiac disease.   In acquired immunity - our body gets sick once, learns to produce antibodies against the thing causing the illness, and "remembers" so it can make more antibodies against it if it's encountered again.   Our body can "learn" to attack those protein "spines" of lectins that may be stuck to cell surfaces.  To lessen the probability that the body will "learn" to attack other lectins in addition to the gluten lectin, avoiding all grains while the immune system is reacting to gluten is a great idea.   Lectins can be irritating to the gastrointestinal system.   Lectins can stimulate IgE (allergic) reactions.  Lectins can cause mast cells to release histamine. Lectins can be difficult to digest.  Lectins can be fermented by gastrointestinal bacteria and yeasts, causing gas, bloating and diarrhea or constipation.  Small Intestinal Bacterial Overgrowth and Candida overgrowth both have symptoms similar to Celiac Disease.  Corn lectins are more apt to be problematic than most other lectins.   Avoiding lectins in the early stages of going gluten free can help reduce other gastrointestinal symptoms and speed up recovery. I have a horrible response to corn, maize, zein.  I break out with Dermatitis Herpetiformis blisters if I consume corn or products made with corn derivatives.   But, there's no gluten in corn or other grains.  Gluten and that 33-mer polypeptide are only in barley, wheat and rye.  And some breeds of oats.   Try a low histamine, low carbohydrate, low Fodmap, grain free, Paleo diet like the Autoimmune Protocol Diet to see how much better you can feel.   It's not always gluten; the immune response is just going crazy.   https://pmc.ncbi.nlm.nih.gov/articles/PMC1115436/
    • knitty kitty
      Celiac pain relief

      By knitty kitty · Posted

      Hope you're feeling better.   I use a combination of Thiamine, Cobalamine, and Pyridoxine (Vitamins B 1, B12, and B6) for pain relief.  Together these vitamins together have pain killing effects (analgesic).  They are water soluble, so the body can easily excrete any excess.  They are safe to take.   Hope this helps.   Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/
    • trents
      Oats gluten free?

      By trents · Posted

      I did some research on what exactly is gluten . . . what defines it.  "The term gluten usually refers to the elastic network of a wheat grain's proteins, gliadin and glutenin primarily . . . " "The types of grains that contain gluten include all species of wheat (common wheat, durum, spelt, khorasan, emmer and einkorn), and barley, rye, and some cultivars of oat" (emphasis mine) "The storage proteins in other grains, such as maize (zeins) and rice (rice protein), are sometimes called gluten, but they do not cause harmful effects in people with celiac disease." (emphasis mine) From: https://en.wikipedia.org/wiki/Gluten What I found most interesting is that some cultivars of oats contain gluten. Could this explain, in part at least, the controversy surrounding oats? I mean, depending on the source, it could indeed sometimes include gluten and cause a celiac reaction.
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