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 

Link to comment
Share on other sites
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/

Link to comment
Share on other sites
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 

Link to comment
Share on other sites
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.  

 

Link to comment
Share on other sites
Mapampmfp Rookie
Mapampmfp
  • Author
Posted
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.

 

 

Link to comment
Share on other sites
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?

Link to comment
Share on other sites

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
      125,796
    • Most Online (within 30 mins)
      7,748
    Cjylha
    Newest Member
    Cjylha
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.8k
    • Total Posts
      68.9k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Elliebee
      Does Hashimoto’s Hypothyroidism elevate Ttg levels ? I have had 3 blood test results where ttg levels are around 39-43 (range 0-19). The first test was in 2021 before I was diagnosed with autoimmune thyroid disease. I had an endos

      By Elliebee · Posted

      Benefits are national but different Drs and health trusts interpret them differently unfortunately. Those diagnosed are supposed to get an annual review, Dexa scans every 2/3 years (one on diagnosis) , annual blood tests to check for vit deficiency etc. But very few seem to get these !    Advice from gastroenterologist:   I suggest monitor if she is asymptomatic, Unfortunately I can not see gastroscopy report, i hope biopsies were taken from D2 and D1. She may also try Gluten free diet for 4-6 weeks and recheck TTG to see if normalise. /—   I know 4 biopsies were taken from D2 in 2021.  I have contacted my private health care provider requesting a referral to gastroenterologist. I’m fed up being monitored! Also worried that if I do have celiac disease I’m damaging my gut and raising risk of cancers which freaks me out !   
    • sboo
      Anybody else have a similar experience...theories welcome as its something which i dont really understand.....

      By sboo · Posted

      I had a couple of friends who after a course of antibiotics were struggling to eat much. The anti biotucs can kill off alit of your gut bacteria and it took quite some time to build these up again but after a year or so they could eat normally again.
    • trents
      Is McDonald's Safe for Gluten-Free Orders?

      By trents · Posted

      Welcome to the forum, @Patrick-Tyler! I think most of us are at least a little nervous about eating at fast food restaurants, even McDonalds, who claims to offer gluten-free fries.  What does that mean? Only that gluten is not an intentional ingredient or does it also mean the fries are cooked in a dedicated frier? This has long been a question kicked around by our community and I'm not sure anyone has ever found a clear answer. I wounder what kind of an answer you would get if you went to a particular McDonalds and asked the manager, "Do you cook your fries in a dedicated frier or are other food products cooked in the same frier that you use to cook your fries?"  Personally, I have eaten fries and meat patties (I take my own gluten free bread or just eat it as a lettuce wrap) at McDonalds quite a few times over the past 20 years since my dx without any discernable gluten reaction. But I am not a particularly sensitive celiac so what I get away with may not be safe for every celiac.
    • Patrick-Tyler
      Is McDonald's Safe for Gluten-Free Orders?

      By Patrick-Tyler · Posted

      Hai Community, I have doubt on  McDonald's? even it is dedicated to fryers and added gluten-free buns, I’d still be nervous about ordering there for my daughter who has celiac. Anyone else feel uneasy about trusting fast food places with cross-contamination? Would love to hear if anyone’s had good (or bad) experiences with gluten-free options at McDonald's or other fast-food restaurants. Thank You...
    • Nogluten4thisgirl
      Is the gluten challenge worth it with what I’ve got going on here?

      By Nogluten4thisgirl · Posted

      I got my dna test back and here are the results:  HLA-DQA1, ALLELE 1 Value 01:02 HLA-DQA1, ALLELE 2 Value 02:01 HLA-DQB1, ALLELE 1 Value 02:02 HLA-DQB1, ALLELE 2 Value 06:02 I had a CT scan, which nothing was found except for a large bowel fecal mass, which doesn’t surprise me because I get super constipated and my GI track doesn’t seem to push anything out.  Stuff just sits in my rectum hanging there…  My blood labs for celiac were negative, but I’ve also been gluten-free since May 2024. Here are my symptoms and why I was getting tested for gluten intolerance or celiac:  Chronic constipation, bowel not active, brain fog, language issues, finding my words, memory issues, brain feels like it’s on fire sometimes, adhd, depression, anxiety, dry mouth, mouth sores, skin lesions/sores that went away with gluten-free diet, dry eyes, joint pain and cracking, chronic fatigue (debilitating physical fatigue- not wanting to move anywhere), graphical tongue, breast tenderness, vitamin B12 and D deficiencies (while not on gluten-free diet), gas that would clear a room, leg and ankle feel like they are heavy or retaining water/painful when walking, acne, brittle nails, night sweats and horrible heart palpitations My GI doc said to do the gluten challenge, but honestly, I’m scared to go through it.  Many of these symptoms have cleared up after gluten-free.  Most noticeable is joint cracking has gone way down, mouth is not as chronically dry, my fatigue is better, graphic tongue is gone (I’ve had this my whole entire life!), vitamin levels are stabilizing, no more horrible smelly gas, my cuticles look much better.   I’m just not sure if it’s worth the true diagnosis and going through it all.   Thoughts??? 
×
×
  • Create New...