Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

A Few Questions


Teachergrl

Recommended Posts

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?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - asaT replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      nothing has changed

    2. - nanny marley replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      IBS-D vs Celiac

    3. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      45

      Supplements for those Diagnosed with Celiac Disease

    4. - par18 replied to Woodster991's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is it gluten?

    5. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      IBS-D vs Celiac

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,342
    • Most Online (within 30 mins)
      7,748

    Muhammad
    Newest Member
    Muhammad
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • asaT
      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin (3) and low vitamin D (10). I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get this test? So I did quit gluten and had the biopsy. It was negative for celiacs. I continued gluten free with iron supps and my ferritin came back up to a reasonable, but not great level of around 30-35.  Could there be something else going on? Is there any reason why my antibodies would be high (>80) with a negative biopsy? could me intestines have healed that quickly (3 months)?  I'm having a hard time staying gluten free because I am asymptomatic and i'm wondering about that biopsy. I do have the celiacs gene, and all of the antibody tests have always come back high. I recently had them tested again. Still very high. I am gluten free mostly, but not totally. I will occasionally eat something with gluten, but try to keep to a minimum. It's really hard when the immediate consequences are nil.  with high antibodies, the gene, but a negative biopsy (after 3 months strict gluten-free), do i really have celiacs? please say no. lol. i think i know the answer.  Asa
    • nanny marley
      I have had a long year of testing unfortunately still not diagnosed , although one thing they definitely agree I'm gluten intolerant, the thing for me I have severe back troubles they wouldnt perform the tests and I couldn't have a full MRI because I'm allergic to the solution , we tryed believe me  I tryed lol , another was to have another blood test after consuming gluten but it makes me so bad I tryed it for only a week, and because I have a trapped sciatic nerve when I get bad bowels it sets that off terribly so I just take it on myself now , I eat a gluten free diet , I'm the best I've ever been , and if I slip I know it so for me i have my own diagnosis  and I act accordingly, sometimes it's not so straight forward for some of us , for the first time in years I can plan to go out , and I have been absorbing my food better , running to the toilet has become occasionally now instead of all the time , i hope you find a solution 🤗
    • asaT
      I was undiagnosed for decades. My ferritin when checked in 2003 was 3. It never went above 10 in the next 20 years. I was just told to "take iron". I finally requested the TTgIgA test in 2023 when I was well and truly done with the chronic fatigue and feeling awful. My numbers were off the charts on the whole panel.  they offered me an endoscopic biopsy 3 months later, but that i would need to continue eating gluten for it to be accurate. so i quit eating gluten and my intestine had healed by the time i had the biopsy (i'm guessing??). Why else would my TTgIgA be so high if not celiacs? Anyway, your ferritin will rise as your intestine heals and take HEME iron (brand 4 arrows). I took 20mg of this with vitamin c and lactoferrin and my ferritin went up, now sits around 35.  you will feel dramatically better getting your ferritin up, and you can do it orally with the right supplements. I wouldn't get an infusion, you will get as good or better results taking heme iron/vc/lf.  
    • par18
      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test" itself. If you were gluten-free and got tested, you more than likely would test "true" negative or just negative. This means that the gluten-free diet is working and no anti-bodies should be present. I know it sounds confusing and if you don't agree feel free to respond. 
    • SilkieFairy
      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.