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Investigated for hypothyroidism also wondering if I have celiac disease.


Moviegeek13
Go to solution Solved by trents,

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Moviegeek13 Newbie

Hi I have come here to see if anyone can help. 

My questions are:

Can you be obese and have celiac disease? 

Can Hypothyroidism be linked to celiac disease?

Has anyone had a negative blood test and found out they have celiacs through an endoscope test? 

I am currently being investigated for hypothyroidism but they can't fully diagnose as its not typical. They said they didn't think the results were correct so I paid for private testing. Which included testing my vitamin D and B12.

The results came back that I was very deficient in Vitamin D and my B12 was in range but on the low end. My calcium is deficient and other vitamins are on the low end. Including my ferritin. 

About 12 years ago I had a miscarriage and doing some research I came across celiac disease. 

A lot of the symptom fitted and I still have them. I have loose stools everyday and at least once a week a bout of diarrhoea, with sharp painful cramps. I regularly have random bouts of nausea sometimes with vomiting. I have had anxiety and low mood for years. I have had brain fog for years and often have to drag myself out of bed and through the day. Lately ive been experiencing a lot of muscle aches and joint pain with stiffness. I am only 39 so I wasn't expecting to have so much pain getting up from the floor. I also get night sweats. The only symptom I dont have is weight loss. I am very overweight. 13st 9lb,  5 foot 3. 

I  asked to be tested 12 years ago but never heard back about the results. I also can't find the results on my patient app. 

I assumed they were negative. So I have just been living with the symptoms but its only recently while researching hypothyroidism that the vitamin deficiency and other things are bringing me back to celiac disease. I have also been getting stains on my teeth even though i only drink water and green tea. Im having to go to the hygienist every few months to get the stains off. 

I am sorry this is so much information ive tried to make it as short as possible. I really appreciate any advice or information that can be given. 

Thankyou Moviegeek13

 


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trents Grand Master

Welcome to the forum, Moviegeek13!

You absolutely can have celiac disease and be overweight. I'm one of them and there are many others in the celiac community who fall into this category. Although it may be true that it is more common to be underweight than overweight in the celiac community, it is a common misconception that if you have celiac disease you will necessarily be underweight. And if you have an underactive thyroid, that would make it even more likely to be obese, even if you have celiac disease.

Your symptoms scream of celiac disease! You need to get retested.

Moviegeek13 Newbie

Thankyou im seeing the doctor on Wednesday so I want to be as prepared as possible. I also forgot to put that I also have rosacea.

  • Solution
trents Grand Master

Where in the world do you live? Does your medical system allow you to request tests beyond the bare bones testing that is normally done for celiac disease? Some medical systems, such as that in the UK, are very rigid in that sense. The reason I'm asking is that many primary care physicians will only order one diagnostic test for celiac disease, namely, the tTG-IGA antibody test. It is considered to be the best single test for celiac disease in that it combines good sensitivity with good specificity. But it can miss about 20% of people who actually do have celiac disease. There are other antibody tests that can and should be run IMO. If your medical system allows some flexibility in what testing is done, ask for: total IGA, tTG-IGA, DGP IgA and IgG. In your case, since you were tested 12 years ago and your assumption is that it was negative, this is particularly relevant. What one test misses, another may pick up.

Moviegeek13 Newbie

Hi yeah I live in the uk. Thankyou I will ask for the other blood tests aswell.

 I didn't know if in some cases you can only find out through a endoscope biopsy or is that very rare? 

trents Grand Master

In the UK, if the tTG-IGA test score is 10x normal, physicians will commonly declare a celiac diagnosis without the followup endoscopy/biopsy of the small bowel lining. Otherwise, a positive tTG-IGA will likely result in a referral to a GI doc for an endsocopy/biopsy which can take many months where you live.

Mimi5324 Newbie
On 4/17/2023 at 10:50 AM, Moviegeek13 said:

Hi I have come here to see if anyone can help. 

My questions are:

Can you be obese and have celiac disease? 

Can Hypothyroidism be linked to celiac disease?

Has anyone had a negative blood test and found out they have celiacs through an endoscope test? 

I am currently being investigated for hypothyroidism but they can't fully diagnose as its not typical. They said they didn't think the results were correct so I paid for private testing. Which included testing my vitamin D and B12.

The results came back that I was very deficient in Vitamin D and my B12 was in range but on the low end. My calcium is deficient and other vitamins are on the low end. Including my ferritin. 

About 12 years ago I had a miscarriage and doing some research I came across celiac disease. 

A lot of the symptom fitted and I still have them. I have loose stools everyday and at least once a week a bout of diarrhoea, with sharp painful cramps. I regularly have random bouts of nausea sometimes with vomiting. I have had anxiety and low mood for years. I have had brain fog for years and often have to drag myself out of bed and through the day. Lately ive been experiencing a lot of muscle aches and joint pain with stiffness. I am only 39 so I wasn't expecting to have so much pain getting up from the floor. I also get night sweats. The only symptom I dont have is weight loss. I am very overweight. 13st 9lb,  5 foot 3. 

I  asked to be tested 12 years ago but never heard back about the results. I also can't find the results on my patient app. 

I assumed they were negative. So I have just been living with the symptoms but its only recently while researching hypothyroidism that the vitamin deficiency and other things are bringing me back to celiac disease. I have also been getting stains on my teeth even though i only drink water and green tea. Im having to go to the hygienist every few months to get the stains off. 

I am sorry this is so much information ive tried to make it as short as possible. I really appreciate any advice or information that can be given. 

Thankyou Moviegeek13

 

I am not an expert regarding dna tests but DNA studies have improved greatly in the last ten years and the HLA gene (certain variants …like a glitch…similar to a mutation…have been linked…. meaning research as proven that individuals who have this disease carry variants..named DQ2 and DQ8 to celiac. If you have celiac symptoms …you will have either the DQ2 or DQ8 or have both. However, you can carry the gene but your immune system may never trigger it to become a disease. I may not be saying it scientifically correct but  Type1diabetes, Lupus, RA,  and other autoimmune disorders which cause inflammation are responsible on the same location ( for celiac) on chromosome 6. I was diagnosed with celiac in 2007 by a British doctor (very familiar with celiac) practicing in the US. It is quite common among those from English European descent. As a child I suffered with anemia, sleep disorder, random stomach aches. When I went off to college and started eating a diet filled with gluten I began to get ulcers, IBS, ulcerative colitis, GERD, rashes and became VERY ill. I can’t tell you how many doctors I saw who never mentioned celiac. The US didn’t really recognize celiac as a common disease in the US until around 2006 or 2007. However, I had a family history of digestive disorders, diabetes, arthritis…and my British doctor recognized  the symptoms. He did the bloodwork tests that measure inflammation from eating gluten which were negative ( it will not be positive if you are avoiding gluten). He told me to stop eating anything with gluten in it…and I did. I knew in three days and have never turned back.  Later when the HLA typing for Celiac came available…I was tested positive. What I learned was that my body had been exposed to gluten for too many years and the inflammation triggered more problems….arthritis, osteoporosis, etc. I also wasn’t aware that the sleep disorder narcolepsy was a variant on the HLA gene. I carry the variant for some other diseases but have not manifested any symptoms( I.e., diabetes, lupus, etc). Get tested. You can order a test on walk-in labs.com. You don’t have to get a doctors orders for it. It will give you a peace of mind and you can keep the info. Confidential.


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Mimi5324 Newbie

If you get the walk-in lab.com test results for the HLA typing for Celiac…it will list numbers of variants….just type in each name on google and it will tell you what it means.  Example “ HLA-DQ8(DQA1*03/DQB1*0302)“ or “HLA-DQ2(DQA1*05/DQB1*02)”.

trents Grand Master

HLADQ6 has recently been linked to celiac disease as well.

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      I'm not saying this is what you have, but your description reminds me of Morgellons, which are not very well understood. Here is a review from a reputable source. If it seems similar to your experience, you could raise this question with your Dr.  https://my.clevelandclinic.org/health/diseases/morgellons-disease
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      Hi Trent, no dairy. Other than good quality butter. I have been lactose free for years. No corn, sugar, even seasonings and spices. I don't eat out. I cook my own food.
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      @nancydrewandtheceliacclue, are you consuming dairy? Not sure if dairy is part of the carnivore diet.
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      Hello Russ! Thank you so much for your reply.  I have not had an antibody test done, ever, relating to gluten. Last year I had an allergy test done via blood draw (as my insurance wouldn't cover the skin test) but this was for pollen and grasses, not food. Even on the blood test I had extremely high levels of reactions to each allergen. Could this seasonal allergy inflammation be contributing to my celiac inflammation? I am so careful, there is no way I could ingest gluten. For example, couple of months ago I tried a cough drop that says it was gluten free. I checked ingredients, it seemed fine. But just taking one of those caused me to have nausea, vomiting, and the same extreme abdominal pain. Have you ever heard of anyone else having symptoms like mine after being diagnosed celiac and strictly gluten free? The last episode I had like this was yesterday, after I ate a certified gluten-free coconut macaroon with a little chocolate on it. I have eaten coconut and chocolate before with no issue,  so I didn't see how I could all of a sudden have such a strong response. 
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