Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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 Celiac.com!
    eNewsletter
    Donate

My Story


Vanquish

Recommended Posts

Vanquish Rookie

Hello all, just figured i'd give you my story and see how closely this resembles your own celiac diagnosis. It all started 6 months ago when i had started to get a rash on my elbows, lower back, and knees. The rash did not go away but was not that bad in the beginning. Until one day about 5 months into having the rash it started to blister and itch terribly bad. Went to the dermo, had 2 biopsies done, first one was negative, second one was positive for DH. My derma wanted me to have another blood test too, the first one being negative and the second one being positive again...so i was referred to my family doc who took another blood test and found i had positive anti endomyseal and anti giladin antibodies. Which i guess is the gold standard for celiac disease. I am unaware if there is any error in those tests however. I went on the gluten free diet in the meantime and my rash cleared up extremely fast probably within 2 weeks. Which is really starting to point me to celiac disease. However i hit some bumps along the road and...i didn't have any reaction. So i was befuddled, can you have celiac and DH but only react to large amounts of gluten? I am awaiting an endoscopy on the 2nd of june which should confirm what i think i already know but is it possible to have all these symptoms and have tropical sprue? I can almost remember my symptoms before my Dh started, and it was major stomach pains maybe once at night for 2 to 3 months prior to starting to have break outs. Oh, and i am the first in both sides of my family to be diagnosed with celiac if i indeed have it (which i am sure i do at this point....unfortunately..). I guess im just confused as to why i can tolerate gluten at some times and not others without the nasty repercussions that other people face. Unless as i go along with the gluten free diet my reaction to gluten ingestion only gets worse. Thats my story up to this point. Just trying to go with the flow of things.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



IMWalt Contributor
So i was befuddled, can you have celiac and DH but only react to large amounts of gluten? I am awaiting an endoscopy on the 2nd of june which should confirm what i think i already know but is it possible to have all these symptoms and have tropical sprue? I can almost remember my symptoms before my Dh started, and it was major stomach pains maybe once at night for 2 to 3 months prior to starting to have break outs. Oh, and i am the first in both sides of my family to be diagnosed with celiac if i indeed have it (which i am sure i do at this point....unfortunately..). I guess im just confused as to why i can tolerate gluten at some times and not others without the nasty repercussions that other people face.

I also wonder the same things. I have recently started the journey of finding out what causes my symptoms, and why sometimes I can eat bread with no reaction and other times I get a bad stomache ache, cramps, gas, etc. That's a mystery to me. What isn't a mystery is how much better I felt when I ate gluten-free for a month. I am 50 years old, and I did not realize I could feel that good. I always thought everybody had the cramps and gas that I did. I thought I was normal. When I asked my doc why I always had those symptoms, all I got was "Hmmmmm". Finally after a 2-year journey to get my daughter diagnosed with celiac disease, I decided to try a gluten-free diet, and it was like somebody flipped a switch and I was normal.

Good luck!

Walt

Link to comment
Share on other sites

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,074
    • Most Online (within 30 mins)
      7,748

    Robert Noah
    Newest Member
    Robert Noah
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Nacina
      Well, that's a big question. When he was seeing the nutrition response testing dr. that changed each time we went in. He hasn't been seeing him regularly for theist ten months. When he had a horribly week in March I started him back on the 4 that were suggested to keep him on. Those are: Standard Process Chlorophyll Complex gluten-free, SP A-F Betafood gluten-free, SP Tuna Omega-3 Oil gluten-free, And Advanced Amino Formula. He also takes a one a day from a company called Forvia (multivitamin and mineral) and Probiotic . Recently he had to start Vitamin D as well as he was deficient.  
    • Fluka66
      Thank you again for your reply and comments which I have read carefully as I appreciate any input at this stage. I'm tending to listen to what my body wants me to do, having been in agony for many years any respite has been welcome and avoiding all wheat and lactose has thankfully brought this.  When in pain before I was seen by a number of gynacologists as I had 22 fibroids and had an operation 13 years ago to shrink them . However the pain remained and intensified to the point over the years where I began passing out. I was in and out of a&e during covid when waiting rooms where empty. My present diet is the only thing that's given me any hope for the future. As I say I had never heard of celiac disease before starting so I guess had this not come up in a conversation I would just have carried on. It was the swollen lymph node that sent me to a boots pharmacist who immediately sent me to a&e where a Dr asked questions prescribed antibiotics and then back to my GP. I'm now waiting for my hospital appointment . Hope this answers your question. I found out more about the disease because I googled something I wouldn't normally do, it did shed light on the disease but I also read some things that this disease can do. On good days I actually hope I haven't got this but on further investigation my mother's side of the family all Celtic have had various problems 're stomach pain my poor grandmother cried in pain as did her sister whilst two of her brother's survived WW2 but died from ulcers put down to stress of fighting.  Wishing you well with your recovery.  Many thanks  
    • knitty kitty
      Welcome to the forum, @Nacina, What supplements is your son taking?
    • knitty kitty
      @BluegrassCeliac, I'm agreeing.  It's a good thing taking magnesium. And B vitamins. Magnesium and Thiamine work together.  If you supplement the B vitamins which include Thiamine, but don't have sufficient magnesium, Thiamine won't work well.  If you take Magnesium, but not Thiamine, magnesium won't work as well by itself. Hydrochlorothiazide HCTZ is a sulfonamide drug, a sulfa drug.  So are proton pump inhibitors PPIs, and SSRIs. High dose Thiamine is used to resolve cytokine storms.  High dose Thiamine was used in patients having cytokine storms in Covid infections.  Magnesium supplementation also improves cytokine storms, and was also used during Covid. How's your Vitamin D? References: Thiamine and magnesium deficiencies: keys to disease https://pubmed.ncbi.nlm.nih.gov/25542071/ Hiding in Plain Sight: Modern Thiamine Deficiency https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/ The Effect of a High-Dose Vitamin B Multivitamin Supplement on the Relationship between Brain Metabolism and Blood Biomarkers of Oxidative Stress: A Randomized Control Trial https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6316433/ High‐dose Vitamin B6 supplementation reduces anxiety and strengthens visual surround suppression https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9787829/ Repurposing Treatment of Wernicke-Korsakoff Syndrome for Th-17 Cell Immune Storm Syndrome and Neurological Symptoms in COVID-19: Thiamine Efficacy and Safety, In-Vitro Evidence and Pharmacokinetic Profile https://pubmed.ncbi.nlm.nih.gov/33737877/ Higher Intake of Dietary Magnesium Is Inversely Associated With COVID-19 Severity and Symptoms in Hospitalized Patients: A Cross-Sectional Study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9132593/ Magnesium and Vitamin D Deficiency as a Potential Cause of Immune Dysfunction, Cytokine Storm and Disseminated Intravascular Coagulation in covid-19 patients https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7861592/ Sulfonamide Hypersensitivity https://pubmed.ncbi.nlm.nih.gov/31495421/
    • BluegrassCeliac
      Hi,   Not saying Thiamine (B1) couldn't be an issue as well, but Mg was definitely the cause of my problems. It's the only thing that worked. I supplemented with B vitamins, but that didn't change anything, in fact they made me sick. Mg stopped all my muscle pain (HCTZ) within a few months and fixed all the intestinal problems HCTZ caused as well. Mom has an allergy to some sulfa drugs (IgG Celiac too), but I don't think I've ever taken them. Mg boosted my energy as well. It solved a lot of problems. I take 1000mg MgO a day with no problems. I boost absorption with Vitamin D. Some people can't take MgO,  like mom, she takes Mg Glycinate. It's one of those things that someone has try and find the right form for themselves. Everyone's different. Mg deficiency can cause anxiety and is a treatment for it. A pharmacist gave me a list of drugs years ago that cause Mg deficiency: PPIs, H2 bockers, HCTZ, some beta blockers (metoprolol which I've taken -- horrible side effects), some anti-anxiety meds too were on it. I posted because I saw he was an IgG celiac. He's the first one I've seen in 20 years, other than my family. We're rare. All the celiacs I've met are IgA. Finding healthcare is a nightmare. Just trying to help. B  
×
×
  • Create New...