Question about test results

[trents]

Yes, kissing can get you glutened. 

I wouldn't throw away your cookware. I would scrub it real good though, especially wooden and cast iron stuff. Only the very most sensitive celiacs have to worry about throwing cookery away. Wait and see how you react using what you have. I think you aren't really that close yet in eliminating other sources of CC besides cookware. It is a learning process. Spices can be a source even.

[driftwood7]

My gastroenterologist's office finally called today to discuss my biopsy results. I didn't get to actually talk to the doctor because he's apparently out with Covid, but they said another doctor reviewed my results and said I have celiac. They didn't say much beyond, "You have celiac, go gluten free." They didn't even have me make a follow up appointment until I asked if I should... Is that normal?? 

Before I heard from them I managed to get a dermatologist appointment for tomorrow for the rash, so I'll go to that tomorrow and see what they say. I hope the dermatologist is able to confirm things. I don't have much faith in the gastroenterologist that I saw.

[trents]

18 minutes ago, driftwood7 said:

My gastroenterologist's office finally called today to discuss my biopsy results. I didn't get to actually talk to the doctor because he's apparently out with Covid, but they said another doctor reviewed my results and said I have celiac. They didn't say much beyond, "You have celiac, go gluten free." They didn't even have me make a follow up appointment until I asked if I should... Is that normal?? 

Before I heard from them I managed to get a dermatologist appointment for tomorrow for the rash, so I'll go to that tomorrow and see what they say. I hope the dermatologist is able to confirm things. I don't have much faith in the gastroenterologist that I saw.

Actually, the community experience is that most physicians, including GI docs, are more conservative than what we feel comfortable with when it comes to concluding that their patients who test positive have celiac disease. So, if your GI doc says you have celiac disease I would take that as gold. I don't understand your reluctance to accept the celiac diagnosis. Your rash may or may not be DH but that shouldn't invalidate the conclusion about celiac disease arrived at through other test means. DH is not all that common among the celiac population so I would not put much weight on that.

[driftwood7]

25 minutes ago, trents said:

Actually, the community experience is that most physicians, including GI docs, are more conservative than what we feel comfortable with when it comes to concluding that their patients who test positive have celiac disease. So, if your GI doc says you have celiac disease I would take that as gold. I don't understand your reluctance to accept the celiac diagnosis. Your rash may or may not be DH but that shouldn't invalidate the conclusion about celiac disease arrived at through other test means. DH is not all that common among the celiac population so I would not put much weight on that.

I'm not reluctant to accept the diagnosis; in fact, I was very much relieved when they called to say it's actually celiac, as I felt like I was crazy and they didn't believe me or take me seriously. My doctor only reluctantly did the initial blood tests because of the symptoms and the fact that my Grandma had celiac, but she told me the tests would come back negative because because I was overweight and the main symptom of celiac is weight loss. When my test result did come back, she told me it was negative, and it wasn't until I looked at the results myself and questioned her that she said, "Oh yeah, I read it wrong." I guess I don't have much faith in doctors at the moment.

Regardless of what dermatology says about the rash I'm considering myself celiac and staying gluten free. I just want another piece of the puzzle looked into.

[Scott Adams]

17 hours ago, driftwood7 said:

My gastroenterologist's office finally called today to discuss my biopsy results. I didn't get to actually talk to the doctor because he's apparently out with Covid, but they said another doctor reviewed my results and said I have celiac. They didn't say much beyond, "You have celiac, go gluten free." They didn't even have me make a follow up appointment until I asked if I should... Is that normal?? 

Before I heard from them I managed to get a dermatologist appointment for tomorrow for the rash, so I'll go to that tomorrow and see what they say. I hope the dermatologist is able to confirm things. I don't have much faith in the gastroenterologist that I saw.

The dermatologist appointment may not be necessary now that you have a formal diagnosis of celiac disease, but it never hurts to investigate the skin issue just in case. 

[driftwood7]

Thank you everyone for all your input and help while going through this whole diagnosis process. I just got my skin biopsy results back, and it was positive for dermititis herpetiformis. 

I'm hoping it will clear up soon. It actually seems like it's gotten worse in the last four days. I'm assuming that means I somehow encountered gluten despite my best efforts?

[trents]

Most likely cause for continued DH and other celiac symptoms is getting gluten from some unexpected source. So, yes. Double down on your efforts to find and eliminate that possibility. Having said that, there are some people who jus don't respond to the gluten-free lifestyle. It's called refractory celiac disease but it is rare. 

[Wheatwacked]

1 hour ago, driftwood7 said:

It actually seems like it's gotten worse in the last four days.

Scott has mentioned a connection between DH flare ups and iodine exposure. Once upon a time a test for DH was to put a drop of iodine on the skin and watch the reaction.

Edited June 6, 2022 by Wheatwacked

[driftwood7]

2 hours ago, Wheatwacked said:

Scott has mentioned a connection between DH flare ups and iodine exposure. Once upon a time a test for DH was to put a drop of iodine on the skin and watch the reaction.

I've considered the possibility, and I don't think I regularly eat anything high in iodine. My fiance isn't a fan of seafood so we never have that, I use kosher salt that doesn't have iodine, only eat eggs on the weekend and not excessively, and I don't have a ton of dairy. I am on levothyroxine for hypothyroidism though... Doesn't that have some sort of iodine in it? I see the dermatologist again on Monday to get my stiches out, so I'll ask her what she thinks.

It dawned on me tonight that maybe my toothbrush is getting me? I don't know if that's a thing or I'm just being paranoid. I've been using the same one that I used before going gluten-free 2 weeks ago. I replaced it with a fresh one tonight. 

[knitty kitty]

16 hours ago, driftwood7 said:

I've considered the possibility, and I don't think I regularly eat anything high in iodine. My fiance isn't a fan of seafood so we never have that, I use kosher salt that doesn't have iodine, only eat eggs on the weekend and not excessively, and I don't have a ton of dairy. I am on levothyroxine for hypothyroidism though... Doesn't that have some sort of iodine in it? I see the dermatologist again on Monday to get my stiches out, so I'll ask her what she thinks.

It dawned on me tonight that maybe my toothbrush is getting me? I don't know if that's a thing or I'm just being paranoid. I've been using the same one that I used before going gluten-free 2 weeks ago. I replaced it with a fresh one tonight. 

We're you checked for iodine deficiency?  Since you don't seem to consume many iodine containing foods, could you simply have iodine deficiency?  Did your doctor do a iodine loading test? 

Levothyroxine is a synthetic hormone given to stimulate the thyroid.  

In iodine deficiency, the thyroid can't produce normal thyroid hormones, resulting in hypothyroidism.

I carefully supplement with Lugol's Solution and selenium and Thiamine Vitamin B1.  

Thiamine insufficiency can cause hypothyroidism because the thyroid needs lots of Thiamine to make those hormones.  Thiamine insufficiency is found in malabsorption diseases like Celiac Disease.  

https://www.thyroid.org/iodine-deficiency/

And...

https://www.healthline.com/nutrition/iodine-deficiency-symptoms#TOC_TITLE_HDR_2

And...

https://pubmed.ncbi.nlm.nih.gov/9703374/

 

 

[driftwood7]

43 minutes ago, knitty kitty said:

We're you checked for iodine deficiency?  Since you don't seem to consume many iodine containing foods, could you simply have iodine deficiency?  Did your doctor do a iodine loading test? 

Levothyroxine is a synthetic hormone given to stimulate the thyroid.  

In iodine deficiency, the thyroid can't produce normal thyroid hormones, resulting in hypothyroidism.

I carefully supplement with Lugol's Solution and selenium and Thiamine Vitamin B1.  

Thiamine insufficiency can cause hypothyroidism because the thyroid needs lots of Thiamine to make those hormones.  Thiamine insufficiency is found in malabsorption diseases like Celiac Disease.  

https://www.thyroid.org/iodine-deficiency/

And...

https://www.healthline.com/nutrition/iodine-deficiency-symptoms#TOC_TITLE_HDR_2

And...

https://pubmed.ncbi.nlm.nih.gov/9703374/

 

 

I have Hashimoto's thyroiditis, as does my mother. Was diagnosed 6 years ago when I still ate plenty of things like seaweed & seafood (sushi etc.) as that was before I met my fiance. So nope on the iodine deficiency. My hypothyroid is just a part of my autoimmune disease collection.

[knitty kitty]

Being diagnosed with Hashimoto's thyroiditis six years ago doesn't rule out the fact that you may have had undiagnosed Celiac Disease then, too, causing malabsorption.  

Celiac Disease and Autoimmune Thyroid Disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2111403/

 

Doctors are good at treating the symptoms without looking for the cause of health problems.  Just saying.

Edited June 7, 2022 by knitty kitty
Typo correction

[knitty kitty]

Efficacy of the Autoimmune Protocol Diet as Part of a Multi-disciplinary, Supported Lifestyle Intervention for Hashimoto’s Thyroiditis

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6592837/

And...

Vitamin D and Autoimmune Thyroid Disease—Cause, Consequence, or a Vicious Cycle?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7551884/

Thought these might help.

[driftwood7]

1 hour ago, knitty kitty said:

Being diagnosed with Hashimoto's thyroiditis six years ago doesn't rule out the fact that you may have had undiagnosed Celiac Disease then, too, causing malabsorption.  

Celiac Disease and Autoimmune Thyroid Disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2111403/

 

Doctors are good at treating the symptoms without looking for the cause of health problems.  Just saying.

I wouldn't be surprised if I've had celiac for quite a while before being diagnosed but 🤷🏼‍♀️ My doctor had to double my thyroid dose back in August (I was on a very small dose), which I suspect may have been due to celiac malabsorption. Either way, at this point all I can really do is follow a gluten-free diet and get regular bloodwork done to check my vitamin and thyroid levels and stuff. Definitely not upping my iodine intake purposefully as I don't want to get my rash angry. Perhaps I may eventually end up being able to reduce my thyroid meds, but only time will tell.

[trents]

14 minutes ago, driftwood7 said:

I wouldn't be surprised if I've had celiac for quite a while before being diagnosed but 🤷🏼‍♀️ My doctor had to double my thyroid dose back in August (I was on a very small dose), which I suspect may have been due to celiac malabsorption. Either way, at this point all I can really do is follow a gluten-free diet and get regular bloodwork done to check my vitamin and thyroid levels and stuff. Definitely not upping my iodine intake purposefully as I don't want to get my rash angry. Perhaps I may eventually end up being able to reduce my thyroid meds, but only time will tell.

Sounds like a wise approach to me.

[knitty kitty]

Me, too.

[Beverage]

On 6/1/2022 at 7:47 PM, driftwood7 said:

because I was overweight and the main symptom of celiac is weight loss.

I was also a little overweight before I was diagnosed, especially for me that had been super skinny most of my life, just figured it was part of getting older. I was finally diagnosed by a naturopath at 59, and he told me he's had several Celiac's patients that were HUNDREDS of lbs overweight. one 300 lbs over.

I went gluten free and dropped 30 lbs in less than a month, I was essentially starving underneath all that inflammation. Gained 10 lbs back, but it's muscle now and I'm very strong, especially for my age at 65.