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. - marion wheaton replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    2. - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    3. - BlessedinBoston replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    4. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

    5. - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,412
    • Most Online (within 30 mins)
      7,748

    Susan Marble
    Newest Member
    Susan Marble
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
×
×
  • 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.