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 Our Content
    eNewsletter
    Donate

Reached a dead end with docs.. could it be non celiac gluten intolerance?!

Mapampmfp
 Share

Recommended Posts

Mapampmfp Rookie
Mapampmfp
Posted

I have hashimotos thyroiditis.

I've always suffered with extreme bloating, but over the last few months I started developing really itchy skin almost like hives, dermatographia, bloating and tiredness.

My GP put me on antihistamines, I had a weekend away and ate gluten laden foods and when I returned I was so ill, extreme fatigue, ulcers on my tongue and my skin was horrendous.

My gp did a celiac blood test my IgE levels came back normal and so did the Ttg so she said there is no way its gluten, I asked if perhaps I could have a gluten intolerance and she said absolutely not and it's not worth me going on a gluten free restrictive diet when my blood tests are fine.

I was just prescribed stronger antihistamines and told to persevere with them but in all honesty this is just starting to get me down, I do have a skin prick allergy test booked privately to see if that picks up anything 

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

Celiac.com Sponsor (A8-M):


knitty kitty Grand Master
knitty kitty
Posted

Yes, it does get frustrating when doctors don't know what is really going on.

Having another autoimmune disease, like Hashimoto's or Diabetes, can affect your anti-Ttg antibody production.  Having vitamin deficiencies can affect your antibody production, too.  

Read these articles and discuss high dose Thiamine with your doctor.

Hiding in Plain Sight: Modern Thiamine Deficiency

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

And...

Thiamine and Hashimoto's thyroiditis: a report of three cases

https://pubmed.ncbi.nlm.nih.gov/24351023/

frieze Community Regular
frieze
Posted
On 9/29/2022 at 2:01 AM, Mapampmfp said:

I have hashimotos thyroiditis.

I've always suffered with extreme bloating, but over the last few months I started developing really itchy skin almost like hives, dermatographia, bloating and tiredness.

My GP put me on antihistamines, I had a weekend away and ate gluten laden foods and when I returned I was so ill, extreme fatigue, ulcers on my tongue and my skin was horrendous.

My gp did a celiac blood test my IgE levels came back normal and so did the Ttg so she said there is no way its gluten, I asked if perhaps I could have a gluten intolerance and she said absolutely not and it's not worth me going on a gluten free restrictive diet when my blood tests are fine.

I was just prescribed stronger antihistamines and told to persevere with them but in all honesty this is just starting to get me down, I do have a skin prick allergy test booked privately to see if that picks up anything 

IgE has nothing to do with celiac 

knitty kitty Grand Master
knitty kitty
Posted

@Mapampmfp,

Would your doctor do a genetic test for the most common Celiac genes?  

Your rash could be Dermatitis Herpetiformis.  A biopsy positive for DH would confirm Celiac Disease. 

Have you been checked for Mast Cell Activation Syndrome?  Vitamin deficiencies?

Deficiency in Vitamin C can cause dermatographia.  Deficiency in B12 can cause hives.  Deficiency in Thiamine can cause fatigue and bloating.  

 

Mapampmfp Rookie
Mapampmfp
Posted
  • Author
On 10/2/2022 at 3:00 AM, knitty kitty said:

@Mapampmfp,

Would your doctor do a genetic test for the most common Celiac genes?  

Your rash could be Dermatitis Herpetiformis.  A biopsy positive for DH would confirm Celiac Disease. 

Have you been checked for Mast Cell Activation Syndrome?  Vitamin deficiencies?

Deficiency in Vitamin C can cause dermatographia.  Deficiency in B12 can cause hives.  Deficiency in Thiamine can cause fatigue and bloating.  

 

Hello,

She just said she did a ige and ttg? Not really familiar with these things sorry! Both came back fine

And nothing else... just a prescription of antihistamines and told me to go privately for allergy testing.

 

It's got to the point now that my skin is really getting me down and I'm becoming very self conscious along with the bloating.

 

 

knitty kitty Grand Master
knitty kitty
Posted

The itchy rash may be Dermatitis Herpetiformis.  If you have DH, you have Celiac Disease.  A dermatologist can take a biopsy NEXT TO an ACTIVE spot.  A dermatologist experienced with DH would be great.  DH has been helped by Niacin Vitamin B 3.  I have DH, but it's not active.

A genetic test looks at your DNA for Celiac genes.  Celiac Disease is hereditary.  Tests are available in doctor offices and through the mail privately.

Keep a food journal. 

Look into a low histamine diet.  (Gluten should be consumed for two months prior to blood tests and endoscopy.  Going gluten free before all testing is complete may invalidate tests.)

Eliminate dairy and processed foods.

Supplement with B Complex vitamins, Vitamin C and Vitamin D.  Check with your doctor -(deficiency tests should be done BEFORE supplementing otherwise you'll get inaccurate measures.)  Celiac Disease causes malabsorption which results in malnutrition, Vitamin and mineral deficiencies.

Ask your doctor about Gastrointestinal Beriberi.  It's a form of thiamine deficiency.  I had it.  I bloated up so big Macy's called about some parade....

Gastrointestinal Beriberi is under recognized by the medical profession.  It is easily remedied by the administration of high dose Thiamine.  I took high dose Thiamine and started feeling better within an hour.  

Mast cells produce histamine.  Mast cells need Thiamine in order to regulate their release of histamine.  Vitamin C and Vitamin B12 break down histamine.  

Can you get a different doctor?

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,042
    • Most Online (within 30 mins)
      7,748
    Nicky Vowden-Renwick
    Newest Member
    Nicky Vowden-Renwick
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.6k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Vaccines

      By trents · Posted

      @GeoPeanut, milk is one of the better sources of iodine. Iodine is known to exacerbate dermatitis herpetiformis. Many people find that a low iodine diet helps them avoid dermatitis herpetiformis outbreaks. So, maybe the fact that you have limited your dairy intake of late is helping with that.
    • GeoPeanut
      Vaccines

      By GeoPeanut · Posted

      Hi, I'm new here. Sorry for your troubles.herenis a thought to mull over. I recently was diagnosed with celiac disease,  and hashimoto's and dermatitis herpetiformis after getting covid 19. I eat butter, and 1/2 cup of Nancy's yogurt daily. I stopped all other dairy and  dermatitis herpetiformis is gone! I also make grass fed beef bone broth to help with myopathy that has occurred. 
    • trents
      Celiac or Addison's complications? Can someone share their experience?

      By trents · Posted

      Welcome to the forum, @KRipple! Sorry to hear of all your husband's health problems. I can only imagine how anxious this makes you as when our spouse suffers we hurt right along with them. Can you post the results from the Celiac blood testing for us to look at? We would need the names of the tests run, the numeric results and (this is important) the reference ranges for each test used to establish high/low/negative/positive. Different labs use different rating scales so this is why I ask for this. There aren't industry standards. Has your husband seen any improvement from eliminating gluten from his diet? If your husband had any positive results from his celiac blood antibody testing, this is likely what triggered the consult with a  GI doc for an endoscopy. During the endoscopy, the GI doc will likely biopsy the lining of the small bowel lining to check for the damage caused by celiac disease. This would be for confirmation of the results of the blood tests and is considered the gold standard of celiac disease diagnosis. But here is some difficult information I have for you. If your husband has been gluten free already for months leading up to the endoscopy/biopsy, it will likely invalidate the biopsy and result in a false negative. Starting the gluten free diet now will allow the lining of the small bowel to begin healing and if enough healing takes place before the biopsy happens, there will be no damage to see. How far out is the endoscopy scheduled for? There still may be time for your husband to go back on gluten, what we call a "gluten challenge" to ensure valid test results.
    • kate g
      Are they close to a drug that will help celiacs with cross contamination

      By kate g · Posted

      Ive read articles that there is stage 2 research being conducted for drugs that will limit damage to celiacs through cross contamination- how close are they to this will there be enough funding to create a mainstream drug? 
    • KRipple
      Celiac or Addison's complications? Can someone share their experience?

      By KRipple · Posted

      Hello, My husband has had issues with really bad diarreah for over nine months now. In mid November, he went to the doctor for what they thought was a bad cold, which two weeks later was diagnosed as bronchitis. A week later, in December, I had to take him back to urgent care and from there, to the emergency room cause his vitals were too low. They said he was having an Addisionan crisis and he spent five days in the ICU. Since my husband has Autoimmune Polyendocrine Syndrome Type II (type 1 diabetes, Addison's and Hashimoto's), I fought for a blood test to determine if he had Celiacs. Given the results of the test, he was told to go to a gastro for an endoscopy. It took two months to get his first appointment with the gastro. Still waiting for the endoscopy appointment. He stopped eating gluten in the hospital and has followed a gluten-free diet since. His diarreah continues to be as bad as before he stopped eating gluten. Still has a horrible cough that makes him hack. His energy is so depleted he pretty much goes to work, comes home and goes lie in bed. He is having issues regulating body temperature. He is barely eating (he's lost 20 pounds since mid-December). Body aches. Totally run down. He has been taking more prednisone lately to try to counter the symptoms.  Today, we went to his endo to discuss these things. She said to continue taking increased amount of prednisone (even though I explained that the increased dosage is only allowing him to do the bare minimum). According to the endo, this is all related to Celiacs. I am concerned because I know that both Celiacs and Addison's can have similar symptoms, but don't know if he would still be having these many symptoms (worsening, at that) related to the Celiac's after stopping gluten two months ago. If anyone in this group has a combination of Celiacs and Addison's, could you please share your experience? I am really concerned and am feeling frustrated. His primary care provider and endocrinologist don't seem to consider this serious enough to warrant prompt attention, and we'll see about the gastro.  Thanks.
×
×
  • Create New...