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A Few Questions


Teachergrl

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Teachergrl Newbie

I apologize if this is a bit long.

I am presently waiting to see a Dermatologist and a GI specialist to help diagnose what my doctor believes is Celiac disease. Since I was in my early 20's I would get blisters on my scalp and occasionally what I thought were pimples around my jaw line that would wax and wane. I would also get itchy, scabby blisters on my elbows that I was originally told was eczema. My mom is hypothyroid and has fibromyalgia and stomach issues that have been diagnosed as IBS. Recently, I experienced 7 months of severe stress due to a divorce. Three days after I signed my legal separation papers, my face broke out in what my doctor believes is Dermatitis Herpetiformis. I have itchy red, painful blisters on both sides of my face. They are in different stages of healing and leave behind dark purple spots once they have healed. This has been going on for almost 7 weeks now. Other than the blisters, the only gastro symptoms I have had are awful constipation, bloating and very narrow stools, even when I use a laxative for relief (sorry for the detail) No diareaha, I also have incredibly swollen glands on my jawline close to where the blisters are forming and have experienced constant Brain Fog. My questions are:

1) Could the stress of my divorce have brought on the Celiac symptoms?

2) Has anyone else experience narrow stools and constipation with Celiac? (not diarreaha) I constantly feel like there is something left inside me.

3) I have been checked for infection and my Dr. said not to worry about the swollen glands-they will go away. She said they were probably related to DH, but based on what I have read about DH, it usually doesn't involve swollen glands. My lesions look like the textbook pictures. Has anyone had swollen glands related to Celiac?


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Sparkle1988 Rookie

Hi there

I have not being diagnosed with celiac but I am currently getting tested. I have had a big swollen gland just under my right jawline for around 4 years. I was told mine would go away but its still there. I should get my biopsy results in 2weeks.

Tabasco Apprentice

It seems as though my flare ups coincide with stress as well. Good luck on your diagnosis.

nasalady Contributor

Hi and welcome!! :)

I am presently waiting to see a Dermatologist and a GI specialist to help diagnose what my doctor believes is Celiac disease.

You have a smart doctor....stick with him/her.

Since I was in my early 20's I would get blisters on my scalp and occasionally what I thought were pimples around my jaw line that would wax and wane. I would also get itchy, scabby blisters on my elbows that I was originally told was eczema.

Recently, I experienced 7 months of severe stress due to a divorce. Three days after I signed my legal separation papers, my face broke out in what my doctor believes is Dermatitis Herpetiformis. I have itchy red, painful blisters on both sides of my face. They are in different stages of healing and leave behind dark purple spots once they have healed. This has been going on for almost 7 weeks now.

Blisters that leave behind dark purple spots as they heal.....classic Dermatitis Herpetiformis (aka DH). I don't know of anything that acts like that. My husband has DH and his behaves exactly like that. If it's DH, you definitely have celiac disease.

My mom is hypothyroid and has fibromyalgia and stomach issues that have been diagnosed as IBS.

She almost certainly has celiac disease, and has had it for a long time. Thyroid autoimmune diseases are very closely linked to celiac disease, and many, many of us have fibro too.

I was also told I had IBS. Turned out not to be the case. I have celiac disease, fibro, RA, Hashimoto's thyroiditis, Sjogren's Syndrome, asthma, psoriasis, and autoimmune hepatitis. The longer celiac disease goes untreated, the more damage is done, the higher your risk of intestinal cancer, AND the more autoimmune diseases you can develop.

Unfortunately I found out I had celiac at the age of 52.

Other than the blisters, the only gastro symptoms I have had are awful constipation, bloating and very narrow stools, even when I use a laxative for relief (sorry for the detail) No diareaha, I also have incredibly swollen glands on my jawline close to where the blisters are forming and have experienced constant Brain Fog. My questions are:

1) Could the stress of my divorce have brought on the Celiac symptoms?

2) Has anyone else experience narrow stools and constipation with Celiac? (not diarreaha) I constantly feel like there is something left inside me.

3) I have been checked for infection and my Dr. said not to worry about the swollen glands-they will go away. She said they were probably related to DH, but based on what I have read about DH, it usually doesn't involve swollen glands. My lesions look like the textbook pictures. Has anyone had swollen glands related to Celiac?

1) Stress can cause all sorts of physical problems. I wouldn't be surprised if it could cause a flare up of your DH symptoms.

2) Yes, my husband also has celiac disease and he has chronic constipation. I have the other problem. :)

3) Don't know about the swollen glands....we haven't experienced that but you could ask in the Dermatitis Herpetiformis forum.

Here's a link to an old topic on this site about swollen glands:

https://www.celiac.com/gluten-free/index.php?showtopic=24132

Good luck!! Keep us posted!

JoAnn

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
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      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
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