Jump to content

  • 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

It's Official For Me Too

beebee07

Recommended Posts

beebee07 Rookie
beebee07
Posted

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 B)....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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


MitziG Enthusiast
MitziG
Posted

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 Rookie
beebee07
Posted
  • Author

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 Rookie
beebee07
Posted
  • Author

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 Veteran
squirmingitch
Posted

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 B)....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 Rookie
beebee07
Posted
  • Author

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! :huh:

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 :P

squirmingitch Veteran
squirmingitch
Posted

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!sad.gif

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


beachbirdie Contributor
beachbirdie
Posted

Tell me about it! :huh:

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 :P

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

MoMof2Boyz Enthusiast
MoMof2Boyz
Posted

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 Rookie
beebee07
Posted
  • Author

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 Rookie
beebee07
Posted
  • Author

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 Enthusiast
MoMof2Boyz
Posted

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 Enthusiast
MitziG
Posted

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 Rookie
beebee07
Posted
  • Author

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 Rookie
beebee07
Posted
  • Author

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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
    2. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      Son's legs shaking

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc. Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food....
    3. Scott Adams
      - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    4. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      Son's legs shaking

      @lizzie42, You're being a good mom, seeking answers for your son. Cheers! Subclinical thiamine deficiency commonly occurs with anemia. An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal. Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps...
    5. Scott Adams
      - Scott Adams replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Bob red mill gluten free oats

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,869
    • Most Online (within 30 mins)
      7,748
    MaryannHall
    Newest Member
    MaryannHall
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
    • Scott Adams
      Bob red mill gluten free oats

      By Scott Adams · Posted

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.