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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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      By trents · Posted

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      Headaches / Migraines and Hypoglycaemia

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      Excessive dietary tyrosine can cause problems.  Everything in moderation.   Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese.  Sulfites cause a high histamine release.  High histamine levels are found in migraine.  Following a low histamine diet like the low histamine Autoimmune Protocol diet, a Paleo diet, helps immensely.    Sulfites and other migraine trigger foods can cause changes in the gut microbiome.  These bad bacteria can increase the incidence of migraines, increasing histamine and inflammation leading to increased gut permeability (leaky gut), SIBO, and higher systemic inflammation.   A Ketogenic diet can reduce the incidence of migraine.  A Paleo diet like the AIP diet, that restricts carbohydrates (like from starchy vegetables) becomes a ketogenic diet.  This diet also changes the microbiome, eliminating the bad bacteria and SIBO that cause an increase in histamine, inflammation and migraine.  Fewer bad bacteria reduces inflammation, lowers migraine frequency, and improves leaky gut. Since I started following the low histamine ketogenic AIP paleo diet, I rarely get migraine.  Yes, I do eat carbs occasionally now, rice or potato, but still no migraines.  Feed your body right, feed your intestinal bacteria right, you'll feel better.  Good intestinal bacteria actually make your mental health better, too.  I had to decide to change my diet drastically in order to feel better all the time, not just to satisfy my taste buds.  I chose to eat so I would feel better all the time.  I do like dark chocolate (a migraine trigger), but now I can indulge occasionally without a migraine after.   Microbiota alterations are related to migraine food triggers and inflammatory markers in chronic migraine patients with medication overuse headache https://pmc.ncbi.nlm.nih.gov/articles/PMC11546420/  
    • trents
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      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
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      Body dysmorphia experience

      By Scott Adams · Posted

      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
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