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

Confused

crzymomto4

Recommended Posts

crzymomto4 Newbie
crzymomto4
Posted

Hi!

About 5 years ago a gastro doc did the blood test for celiacs, because I had chronic diarrhea and other symptoms that pointed to possible celiacs. The test came back positive. The doctor did a biopsy which was negative. I was told I did not have celiacs. The doc said since I was overweight I had IBS. I was later diagnosed with fibromyalgia.

Fast forward to today. We have moved to another state. I still have all the symptoms but much worse. I am now diabetic (extremely insulin resisitant). About three weeks ago I developed a blistery, red, itchy rash on both of my elbows. Nothing helps this rash. I have tried Benadryl (oral and topical), claritin and Zyrtec. it will go away in small spots but other bumps appear on other parts of the arm but in close proximity to the rest of the rash.

Does this sound like celiacs? I am seeing a new dr. on Friday to establish medical care in our new area. What should I tell/ask the doc?

Thank you,

Denise

PS. My 12yos has many of the same symptoms minus the rash.

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted
Hi!

About 5 years ago a gastro doc did the blood test for celiacs, because I had chronic diarrhea and other symptoms that pointed to possible celiacs. The test came back positive. The doctor did a biopsy which was negative. I was told I did not have celiacs. The doc said since I was overweight I had IBS. I was later diagnosed with fibromyalgia.

Fast forward to today. We have moved to another state. I still have all the symptoms but much worse. I am now diabetic (extremely insulin resisitant). About three weeks ago I developed a blistery, red, itchy rash on both of my elbows. Nothing helps this rash. I have tried Benadryl (oral and topical), claritin and Zyrtec. it will go away in small spots but other bumps appear on other parts of the arm but in close proximity to the rest of the rash.

Does this sound like celiacs? I am seeing a new dr. on Friday to establish medical care in our new area. What should I tell/ask the doc?

Thank you,

Denise

PS. My 12yos has many of the same symptoms minus the rash.

....................................................................................................

...........................

YES, IT DOES SOUND LIKE CELIAC. And, you doctor is not informed. I assume that you tested positive through blood work. If that test was positive, that is a diagnosis. It does not matter if your biopsy is negative. Biopsies can be very hit and miss and as a result, not a reliable tool for diagnosis.

You can have your rash biopsied for DH. A positive diagnosis for DH is also one for Celiac.

Should you want to be retested for Celiac, this is what should be ordered by your doctor: (assuming that you have continued to eat gluten)

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

Welcome to the Club.

(sorry, don't know how this format happened)

Rachel--24 Collaborator
Rachel--24
Posted

Yes, it sounds like Celiac and since you did have positive bloodwork you do need to be on the gluten free diet. A negative biopsy does not rule out Celiac....its hit or miss. Damage can be "patchy" and easily missed...especially if only one or two samples are taken.

The rash sounds like Dermatitis Herpetiformis (DH) which is associated with Celiac Disease. Open Original Shared Link

If you're looking for a "gold standard" diagnosis you can repeat the biopsy and you may get positive results this time. You can also have your skin tested to see if the rash is DH...this would also be diagnostic for Celiac.

Open Original Shared Link

The positive bloodwork is also diagnostic....unfortunately, it seems that your previous doctor didnt feel that it was enough. You should have been told at that time to begin the gluten free diet even with the biopsy coming back negative.

If you wish to have more testing done you cannot start the gluten free diet until all testing is completed.

Archived

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

Go to topic listing

  • 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. trents
      - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

      This article does not address migraines at all. Yes, red wine and sulfites are often mentioned in connection with migraine triggers. With me, any kind of alcoholic beverage in very modest amounts will reliably produce a migraine. Nitrous oxide generators, which are vaso dialators, also will give me migraines reliably. So, I think most of my migraines...
    2. knitty kitty
      - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

      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,...
    3. trents
      - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

      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.
    4. Scott Adams
      - Scott Adams replied to Russ H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      KAN-101 Treatment for Coeliac Disease

      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."
    5. Scott Adams
      - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Body dysmorphia experience

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


  • Member Statistics

    • Total Members
      132,156
    • Most Online (within 30 mins)
      7,748
    Shrub
    Newest Member
    Shrub
    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

    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      This article does not address migraines at all.  Yes, red wine and sulfites are often mentioned in connection with migraine triggers. With me, any kind of alcoholic beverage in very modest amounts will reliably produce a migraine. Nitrous oxide generators, which are vaso dialators, also will give me migraines reliably. So, I think most of my migraines are tied to fluctuations vascular tension and blood flow to the brain. That's why the sumatriptan works so well. It is a vaso constrictor. 
    • knitty kitty
      Headaches / Migraines and Hypoglycaemia

      By knitty kitty · Posted

      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
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      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. 
    • Scott Adams
      KAN-101 Treatment for Coeliac Disease

      By Scott Adams · Posted

      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."  
    • Scott Adams
      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.
×
×
  • 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.