It's Official For Me Too

[beebee07]

Well, I would like to say my health has improved in the three or so weeks I have been gluten free but sadly that has not been the case for me. Multiple trips since registering with this forum about three weeks ago to the doctor and ER dept have seen me sent to an Endocrinologist and a recommendation to see a Neurologist. Why? Because my morning nausea attacks ( between 5-7am) were turning into seizures of some sort, and causing me to be bed-ridden all morning, slowly coming right by afternoon and feeling pretty normal by the evening. I am slowly getting to to the point ....so after my last trip last Thursday to the ER in desperation, I got told my bloods showed I was hyperthyroid and I needed a scan and more test through an Endocrinologist. Off I went this morning feeling hopeful that I was finally making progress only to be told that while I am hyperthyroid according to the bloods they don't know why and won 't treat me. But by the way your endoscopy came back positive for Celiac ( I had a positive EMA and tTg about a month ago) has your Gastro told you?! No, was the answer to that question! So the Endo then mentioned B12 and I asked why and then he swiftly changed the subject. I have been asking my GP to check and he kept brushing me off. Does my situation in anyway reflect anyone elses? As you can probably tell from my message I am not in the best headspace at the mo. My faith in doctors has slowly dissipated over the past few months.

[MitziG]

Oh for petes sake! They didn't even call to tell you that you had celiac?! I would suggest new docs immediately.

Also...B12 deficiency can cause a LOT of serious problems- not sure if seizures are one of them, but definitely neurological issues.

You need to have them check: B12, B6, Vit A,E,D &K, iron and ferritin. To start with. Don't take no for an answer!

It is possible you are having weird withdrawal issues as well- strange things can happen. My daughter had constant nausea and horrible eczema rashes from going off gluten, and finished it off with shingles in her eardrum that put her in the hospital for 3 days and cost her part of her hearing. Doctors will sniff at gluten "withdrawal" but it is very, very real, and in some people, very, very serious.

Being only 3 wks gluten-free it is very possible your symptoms are withdrawal related, but definitely get the blood tests I mentioned asap. I hope you feel better soon!

[beebee07]

Thanks MItziG for your reply, I really appreciate it.

I had the Vit B12 yesterday and apparently my test result was 377 when the normal range is 150 - 800. Doc felt that was middle of the range so nothing to be concerned about.

I will look into those other vitamin tests, I think most of them have been done and came back normal. Those seizure type episodes only began when I started gluten free so I am wondering if your thoughts about withdrawl are on the mark.

I think I am eating gluten free, my sister in law also has Celiac so I have been following her lead. The support from the Gastro and GP have been a bit limited, simply "have you spoken to a dietician" to which my reply has been no and then a referral to a dietician is reccomended but nothing has happened! My husband is going to contact the Celiac Society here in New Zealand to get some more info.

Again, thanks very much for your reply

[beebee07]

Oh for petes sake! They didn't even call to tell you that you had celiac?! I would suggest new docs immediately.

Also...B12 deficiency can cause a LOT of serious problems- not sure if seizures are one of them, but definitely neurological issues.

You need to have them check: B12, B6, Vit A,E,D &K, iron and ferritin. To start with. Don't take no for an answer!

It is possible you are having weird withdrawal issues as well- strange things can happen. My daughter had constant nausea and horrible eczema rashes from going off gluten, and finished it off with shingles in her eardrum that put her in the hospital for 3 days and cost her part of her hearing. Doctors will sniff at gluten "withdrawal" but it is very, very real, and in some people, very, very serious.

Being only 3 wks gluten-free it is very possible your symptoms are withdrawal related, but definitely get the blood tests I mentioned asap. I hope you feel better soon!

P.s. Sorry to hear about your daughter, I hope she is well now.

[squirmingitch]

Well, I would like to say my health has improved in the three or so weeks I have been gluten free but sadly that has not been the case for me. Multiple trips since registering with this forum about three weeks ago to the doctor and ER dept have seen me sent to an Endocrinologist and a recommendation to see a Neurologist. Why? Because my morning nausea attacks ( between 5-7am) were turning into seizures of some sort, and causing me to be bed-ridden all morning, slowly coming right by afternoon and feeling pretty normal by the evening. I am slowly getting to to the point ....so after my last trip last Thursday to the ER in desperation, I got told my bloods showed I was hyperthyroid and I needed a scan and more test through an Endocrinologist. Off I went this morning feeling hopeful that I was finally making progress only to be told that while I am hyperthyroid according to the bloods they don't know why and won 't treat me. But by the way your endoscopy came back positive for Celiac ( I had a positive EMA and tTg about a month ago) has your Gastro told you?! No, was the answer to that question! So the Endo then mentioned B12 and I asked why and then he swiftly changed the subject. I have been asking my GP to check and he kept brushing me off. Does my situation in anyway reflect anyone elses? As you can probably tell from my message I am not in the best headspace at the mo. My faith in doctors has slowly dissipated over the past few months.

Well golly! Nothing like failing to tell you something important. And what a confusing episode. You're hyperthyroid but they don't know why so they won't treat you for it???????? What the ?????

[beebee07]

Well golly! Nothing like failing to tell you something important. And what a confusing episode. You're hyperthyroid but they don't know why so they won't treat you for it???????? What the ?????

Tell me about it!

Apparently my TSH is undectable but T4 is 25 (normal range high is 20) and they don't know why, I.e.I don't have Graves or a nodule on my thyroid.....rather frustrating! I have to keep doing bloods every two weeks to see if that result changes and if it gets worse then they will do something. I guess that T4 isn't high enough above normal. I will focus on the Celiac as being my major health issue until I hear otherwise

[squirmingitch]

And then I wonder if the Endo read the celiac panel results & concluded they are positive but the GI didn't deem them positive. I just hate it when docs don't give you the whole story!

[beachbirdie]

Tell me about it!

Apparently my TSH is undectable but T4 is 25 (normal range high is 20) and they don't know why, I.e.I don't have Graves or a nodule on my thyroid.....rather frustrating! I have to keep doing bloods every two weeks to see if that result changes and if it gets worse then they will do something. I guess that T4 isn't high enough above normal. I will focus on the Celiac as being my major health issue until I hear otherwise

They shouldn't be checking only for your T4. They should be looking at your free T3.

[MoMof2Boyz]

definitely see another doctor..I believe vomiting can be a sign of hyperthyroidism...and you definitely should be treated... untreated can lead to serious problems.

[beebee07]

They shouldn't be checking only for your T4. They should be looking at your free T3.

I have only seen one record of T3 recently, taken on 8th June which was 7.2 normal range is (4-6.8). Last TSH was less than 0.03 (0.4 -3.8) and T4 was 25.3 (12.8-20.4) so I guess those T levels are not considered abnormal enough yet to address. I have to keep re-testing every fortnight . Thanks for responding. It's nice to not feel so alone with all this

[beebee07]

definitely see another doctor..I believe vomiting can be a sign of hyperthyroidism...and you definitely should be treated... untreated can lead to serious problems.

Hi momof2boyz, I don't vomit just horrendous nausea followed by breathing issues and then these sort of seizures most mornings upon waking between 5-7am. Going to a Neurologist later today to rule out anything neurological. I am pretty confident it is not. Thanks for your reply.

[MoMof2Boyz]

I have only seen one record of T3 recently, taken on 8th June which was 7.2 normal range is (4-6.8). Last TSH was less than 0.03 (0.4 -3.8) and T4 was 25.3 (12.8-20.4) so I guess those T levels are not considered abnormal enough yet to address. I have to keep re-testing every fortnight . Thanks for responding. It's nice to not feel so alone with all this

your tsh is low and your t3 and t4 are high, everything is out of range. really what are they waiting for???

[MitziG]

Yes, my dd is much better now- but last year was rough!

You may be interested in knowing that in most other countries, a B12 level below 500 is considered deficient and is treated. Countries that do so have a significantly lower rate of dementia and alzheimers than the US. It has been hypothesized that many alzheimers patients here are simply B12 deficient. Which is a real shame. In your shoes, I would begin supplementing, and keep a close eye on it.

[beebee07]

your tsh is low and your t3 and t4 are high, everything is out of range. really what are they waiting for???

The Endo said they weren't sure why I was hyperthyroid so wanted to see if those levels mormalised. He wondered if a CAT scan I had done in first week of May was the cause, they injected radioactive tracer, Iodine I believe. These latest results are 4 - 6 weeks since then so I don't know really.

[beebee07]

Glad to hear your daughter is much better MitziG. I have a son and daughter aged 7 and nearly 5. I believe I need to get them tested too now that I have a definite diagnosis.