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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,546
    • Most Online (within 30 mins)
      7,748
    KimberlyAnne76
    Newest Member
    KimberlyAnne76
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.