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

Mapampmfp
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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 

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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?

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