The signs point to celiac!

[HannahR67]

 

I am 22 and have had Type 1 Diabetes for years. I've just had a total thyroidectomy for Thyroid Cancer and was convinced my Thyroid wasn't functioning properly, but never had the correct blood-work to prove it (only TSH). 

My doctor did a blood test for Celiac, but I had already been off gluten for about a week or 2 before the test. I only started eating gluten again 2 days before. I told my doctor this, but she said it was fine. Now here I am months later with a negative blood test and still not eating gluten because it makes me so sick. 

Since my thyroid surgery/hormone replacement and quitting gluten ALL my symptoms are gone. Its hard to tell what was caused by my Thyroid and what was gluten. I already have had Type 1 diabetes since 3rd grade, another autoimmune.

It would be best to have a diagnoses of Celiac so people would take me more seriously with Gluten Free and understand me! Many people think I'm overreacting and that "Gluten sensitivity" isn't real.

I have had stomach issues my whole life. I've been feeling especially awful the past 2 years. Extreme brain fog, anxiety, depression, constipation, diarrhea, joint pain, severe abdominal pain under my left rib, losing hair, bladder pain, extreme dizziness/blurry eyes, migraines....I could go on and on! I lost 20 lbs a few months ago out of nowhere. I have also in the past been tested Iron deficient and vitamin D deficient. 

 

With everything happening I know gluten can't be good for me with how it makes me feel. My question is, can I still be diagnosed at this point of being off gluten for a month+? I don't want to start eating it again, but I do want a proper diagnosis. Would my intestines still show damage at this point? 

My blood test results are confusing. It says IGA was 123 (reference range 65-450 mg/dl) and Tissue Transglutaminase <1.2 (Negative <4). That's all I see for values. Does this make sense and should I trust it?

 

Thank you! Hannah

[Gemini]

Hannah........Thyroid disease and Type 1 diabetes are the top 2 "other" autoimmune diseases that occur with Celiac.
Apparently, the thyroid and the pancreas are 2 other places that the autoimmune system likes to gravitate to and destroy.  I suspect that genetics plays key role.  But let me tell you something.......I have Celiac and Hashi's thyroid disease.  My brother had Type 1 diabetes very young, like you did.  I strongly suspected he also had Celiac because he had severe gastro problems his whole life, which the docs attributed to his diabetes.    

Well.....it didn't end well for my brother.  Because his docs kept blowing off a potential Celiac diagnosis, he never had good health.  He struggled to control his diabetes because he probably wasn't absorbing his food and meds well.  It's very easy to develop artery blockages if your blood sugar isn't managed well and he did.  Had a couple of stents put in when he was only 49 years old.  This past summer, at the age of 60, he died of a massive heart attack, in the hospital, because he had been having a problem with diarrhea AGAIN and, couple that with his kidney disease, he could not stay hydrated.  He died and I will always put part of the blame on the AMA because they never took Celiac seriously, even with a diagnosed sister.  This is what happens when the root cause of a problem is not looked for and found.

I would suggest that you have gene testing done because that, at least, will tell you if you have the genetics to trip for Celiac.  It is not a diagnosis but you have the potential to acquire the disease. Unless you start eating gluten again, the antibody testing will not be viable.  Have you considered doing a biopsy to visibly check the small intestine and take samples?  How long have you been gluten free?  It can take a bit for healing to occur so there may be damage that can be detected.

Other than that, LISTEN to your body.  You said all your symptoms went away eating gluten free and I doubt that your thyroid was responsible for all your symptoms.  If you cannot obtain an official diagnosis, do not let that stop you from achieving health.  Do not end up like my brother!  I know you are young but forget about those who throw doubt at you.  Tell them your health is more important and the testing available cannot be done without ingesting gluten, which makes you severely ill.  It's none of anyone's business how you eat.  You are so young and have your whole life ahead of you so do what's best for Hannah!  

[HannahR67]

4 minutes ago, Gemini said:

Hannah........Thyroid disease and Type 1 diabetes are the top 2 "other" autoimmune diseases that occur with Celiac.
Apparently, the thyroid and the pancreas are 2 other places that the autoimmune system likes to gravitate to and destroy.  I suspect that genetics plays key role.  But let me tell you something.......I have Celiac and Hashi's thyroid disease.  My brother had Type 1 diabetes very young, like you did.  I strongly suspected he also had Celiac because he had severe gastro problems his whole life, which the docs attributed to his diabetes.    

Well.....it didn't end well for my brother.  Because his docs kept blowing off a potential Celiac diagnosis, he never had good health.  He struggled to control his diabetes because he probably wasn't absorbing his food and meds well.  It's very easy to develop artery blockages if your blood sugar isn't managed well and he did.  Had a couple of stents put in when he was only 49 years old.  This past summer, at the age of 60, he died of a massive heart attack, in the hospital, because he had been having a problem with diarrhea AGAIN and, couple that with his kidney disease, he could not stay hydrated.  He died and I will always put part of the blame on the AMA because they never took Celiac seriously, even with a diagnosed sister.  This is what happens when the root cause of a problem is not looked for and found.

I would suggest that you have gene testing done because that, at least, will tell you if you have the genetics to trip for Celiac.  It is not a diagnosis but you have the potential to acquire the disease. Unless you start eating gluten again, the antibody testing will not be viable.  Have you considered doing a biopsy to visibly check the small intestine and take samples?  How long have you been gluten free?  It can take a bit for healing to occur so there may be damage that can be detected.

Other than that, LISTEN to your body.  You said all your symptoms went away eating gluten free and I doubt that your thyroid was responsible for all your symptoms.  If you cannot obtain an official diagnosis, do not let that stop you from achieving health.  Do not end up like my brother!  I know you are young but forget about those who throw doubt at you.  Tell them your health is more important and the testing available cannot be done without ingesting gluten, which makes you severely ill.  It's none of anyone's business how you eat.  You are so young and have your whole life ahead of you so do what's best for Hannah!  

Thank you for your response! I'm so sorry to hear about your brother. It must be so frustrating. I have definitely noticed my blood sugar control has been a lot better since gluten free! I've taken my insulin control into my own hands instead of waiting for my doctors to help me adjust it. Its taken some research online to start to understand it better.  I really want to get an endoscopy and will start working in that direction. Its hard because I do feel a little bit crazy constantly at the doctors! 

I actually had to demand that they look further into my thyroid. With all my celiac symptoms and thyroid symptoms I had a doctor tell me "this is in your head, your family has mental health issues in their past..... get more sun". Too funny because I was a camp counselor and outside in the sun everyday! And it ended up being CANCER!!! I have found a PCP who listens since then. 

I know I might seem crazy, but I will push to get an endoscopy. Its worth it, with everything going against me right now! Thank you for your encouragement. 

[Gemini]

36 minutes ago, HannahR67 said:

Thank you for your response! I'm so sorry to hear about your brother. It must be so frustrating. I have definitely noticed my blood sugar control has been a lot better since gluten free! I've taken my insulin control into my own hands instead of waiting for my doctors to help me adjust it. Its taken some research online to start to understand it better.  I really want to get an endoscopy and will start working in that direction. Its hard because I do feel a little bit crazy constantly at the doctors! 

I actually had to demand that they look further into my thyroid. With all my celiac symptoms and thyroid symptoms I had a doctor tell me "this is in your head, your family has mental health issues in their past..... get more sun". Too funny because I was a camp counselor and outside in the sun everyday! And it ended up being CANCER!!! I have found a PCP who listens since then. 

I know I might seem crazy, but I will push to get an endoscopy. Its worth it, with everything going against me right now! Thank you for your encouragement. 

We have all heard the "this is in your head" BS from docs and I am no exception.  I guess he never read that some mental health issues are firmly connected to Celiac.  It affects the brain as well as the small intestine.

I am SOOOOOOOO glad you pushed back hard with your thyroid.  My God, what would have happened if you hadn't? With the fact that you are controlling your blood sugar better gluten free, that's another red flag so don't doubt it.

Thank you for your words about my brother.  It is very hard and I miss him. It was a death that really should not have happened.  Hindsight is always 20/20......

Good luck with your demands!  I suspect you will not be taking no for an answer. LOL!