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

Not Healing.. Thyroid Problems?

amberlink09

Recommended Posts

amberlink09 Apprentice
amberlink09
Posted

Hey guys,

I've been completely gluten and dairy free for two years now, and I'm positive I am not getting any gluten from anywhere. I have only gotten worse in the past few years, I've been tested for Chron's but everything came back fine. I've been on an elimination diet but found no problematic foods. I still suffer from the same gastrointestinal symptoms as I did before I was diagnosed, though they seem to be getting worse. My immune system also seems to be weakening, in the past six months I've had mono, been hospitalized with two kidney infections, and had multiple colds along with bronchitis. I recently has some tests done and found that my levels of Thyroxine (T4) were high and my T3 uptake is low. I am also lacking in most vitamins and anemic, and my triglycerides are high. I am 20 years old, 5'2", and 118 lbs. I eat a diet high in fiber, with lots of whole grains, fruits and veggies, and lean meats, I also work out when I can. I am in college and with the way I take care of my body I should be the healthiest person I know BY FAR, yet I am sick all the time. Has anyone else had these problems? Sorry for the long post!

-Amber

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

Celiac.com Sponsor (A8-M):


cassP Contributor
cassP
Posted

Hey guys,

I've been completely gluten and dairy free for two years now, and I'm positive I am not getting any gluten from anywhere. I have only gotten worse in the past few years, I've been tested for Chron's but everything came back fine. I've been on an elimination diet but found no problematic foods. I still suffer from the same gastrointestinal symptoms as I did before I was diagnosed, though they seem to be getting worse. My immune system also seems to be weakening, in the past six months I've had mono, been hospitalized with two kidney infections, and had multiple colds along with bronchitis. I recently has some tests done and found that my levels of Thyroxine (T4) were high and my T3 uptake is low. I am also lacking in most vitamins and anemic, and my triglycerides are high. I am 20 years old, 5'2", and 118 lbs. I eat a diet high in fiber, with lots of whole grains, fruits and veggies, and lean meats, I also work out when I can. I am in college and with the way I take care of my body I should be the healthiest person I know BY FAR, yet I am sick all the time. Has anyone else had these problems? Sorry for the long post!

-Amber

ok, so- you got your T4 & T3 tested, but no TSH?? those 2 are not enough.. if they were- i would remain undiagnosed. and TSH alone is not enough- or many others will remain undiagnosed. ALSO- you need to get tested for all 3 antibodies so you and your doctor will know if you're dealing with any Hashimoto's or Grave's or both.

i never realized untill i was diagnosed & medicated just HOW MUCH your thyroid can affect your digestive system- it's CRAZY- without realizing it-> over the years i was eating less and less... and making sure at work that i had a whole hour for lunch so i could digest. now that im on meds- i see my motility improving, and im able to eat a little more, and digest more normally.

also, i hear that thyroid disorders can make u more succeptible to infections.

also a Vitamin D deficiency can lead to infections.

vitamin deficiencies & thyroid disorders are SO COMMON in those of us with an intolerance to gluten-> and many times they can take much longer to correct than simply going gluten free- it can take months or even years of the right supplementation & medications.

now- grains... if you're still having gut problems- you may need to look into what other grains may be problematic for you- there's many on here who are completely grain free- OR picking and choosing our grains. IE: for me, white rice and quinoa are so fine, and Corn almost is as worse as gluten. others on here are the opposite. start researching the Paleo diet, the Specific Carbohydrate Diet, dare i say The Bloodtype Diet, etc.

you may also want to take a look at the Low Fodmap diet- as many of us also have to follow that to some extent.

or elimination diets.. tho i dont know much about them.

and finally- if you DO have thyroid issues- you may need to avoid Soy.

sorry so long

amberlink09 Apprentice
amberlink09
Posted
  • Author

ok, so- you got your T4 & T3 tested, but no TSH?? those 2 are not enough.. if they were- i would remain undiagnosed. and TSH alone is not enough- or many others will remain undiagnosed. ALSO- you need to get tested for all 3 antibodies so you and your doctor will know if you're dealing with any Hashimoto's or Grave's or both.

i never realized untill i was diagnosed & medicated just HOW MUCH your thyroid can affect your digestive system- it's CRAZY- without realizing it-> over the years i was eating less and less... and making sure at work that i had a whole hour for lunch so i could digest. now that im on meds- i see my motility improving, and im able to eat a little more, and digest more normally.

also, i hear that thyroid disorders can make u more succeptible to infections.

also a Vitamin D deficiency can lead to infections.

vitamin deficiencies & thyroid disorders are SO COMMON in those of us with an intolerance to gluten-> and many times they can take much longer to correct than simply going gluten free- it can take months or even years of the right supplementation & medications.

now- grains... if you're still having gut problems- you may need to look into what other grains may be problematic for you- there's many on here who are completely grain free- OR picking and choosing our grains. IE: for me, white rice and quinoa are so fine, and Corn almost is as worse as gluten. others on here are the opposite. start researching the Paleo diet, the Specific Carbohydrate Diet, dare i say The Bloodtype Diet, etc.

you may also want to take a look at the Low Fodmap diet- as many of us also have to follow that to some extent.

or elimination diets.. tho i dont know much about them.

and finally- if you DO have thyroid issues- you may need to avoid Soy.

sorry so long

Hey CassP,

I did have my TSH tested, it was normal (.77 normal- .45-4.5). And I do have a vitamin deficiency, including calcium and Vitamin D. To me it looked like I am hyperthyroid, but that doesn't make a lot of sense to me since I seem to be on the constipated, never hungry, tired, and gaining weight though I never eat side. Though of course this could go hand in hand with other disorders.

I did the Specific Carbohydrate Diet/Paleo for about 5 months but it didn't work so well for me. I did find that I do not do well with corn or rice so I try to stay away from those. I have also been thinking about trying the FODMAP diet, I know a lot of people have had success with it. I am about to start working with a nutritionist so hopefully that will help. I've also been trying to stay away from soy, though after limiting my foods for so long I find that I have a hard time giving up more food groups!

cassP Contributor
cassP
Posted

Hey CassP,

I did have my TSH tested, it was normal (.77 normal- .45-4.5). And I do have a vitamin deficiency, including calcium and Vitamin D. To me it looked like I am hyperthyroid, but that doesn't make a lot of sense to me since I seem to be on the constipated, never hungry, tired, and gaining weight though I never eat side. Though of course this could go hand in hand with other disorders.

I did the Specific Carbohydrate Diet/Paleo for about 5 months but it didn't work so well for me. I did find that I do not do well with corn or rice so I try to stay away from those. I have also been thinking about trying the FODMAP diet, I know a lot of people have had success with it. I am about to start working with a nutritionist so hopefully that will help. I've also been trying to stay away from soy, though after limiting my foods for so long I find that I have a hard time giving up more food groups!

hey- actually the TSH range is debatable these days. a team of endocrinologists want it changed. i forget the bottom number- but the top limit number is 3. so, ie: if you had a "4" you might very well be hypothyroid, even tho your doc thinks you're normal. that's why antibody tests are such a great idea- that's what they test for with Celiac- the antibodies.

good luck,keep us posted

  • 2 months later...
momof2peanutz Newbie
momof2peanutz
Posted

Hi Amber -

I'm just a mom w/ two kids.. all of us are gluten-free and my kids are also dairy free. I've done a lot of reading and about 12 yrs ago went to a phenomenal nutritionist (PhD, as well), Dr. Fred Bisci. This dude's healed people of cancer. He is so great - He sees people for consultation, also. Not a money-grubbing guy. He's 80-yrs-old and he really understands the biochemistry of foods and the body, in general.

Off the top of my head, I would maybe try to take some vit D. Be careful not to take huge doses @ once. My doc (medical doc) once prescribed pills that were two weeks worth in each pill and I got sick because vit D is fat-soluble, not water-soluble and can be toxic too lg. a quantity.

Also, I am thinking it is possible (you probably know this, but) you're body might be (?) getting something that is causing sickness - such as things that celiacs are/may be sensitive to (for me - cross-contamination @ any restaurant or cafeteria, citric acid, maltodextrin, or any modified food starch). You probably have these bases covered. Also, non-gluten-free soy sauce or even oats. Even gluten free oats, I've heard, are too close to the "wheat family" for some celiacs, and they have a reaction to them.

Also, I have heard of celiacs being sensitive to nitrates (I'm sure you're aware) - found in hot dogs, bacon, ham. Also, diet chemicals or sweeteners.

A last possibility is that your body has heavy metal poisoning, in which case you would need to detox. Usually, to my understanding, your body can do this if you eat just fruits and veggies (organic preferably), meats, brown rice (there's also brown rice pasta), potatoes..

I would highly recommend a consult with Fred Bisci and I would buy his book. I am not advertising anything and I don't get anything for this. I just have never seen anyone else have the wisdom this guy has on nutrition. He approaches it very simplistically.

Just from a mom/celiac/previous issues w/ thyroid and lack of carb- standpoint - I would recommend you get enough carbohydrates (potatoes, sweet potatoes, brn rice if you can tolerate it, lots of fruit..) I was also just reading on a celiac facebook page ("Does that have gluten in it?") someone commented that it's possible that most people who are celiac also have thyroid issues. I am not a doc, but I can see how this would be true. I was recently on an extremely low-carb diet for weightloss and if I am not mistaken, a lack of carbs can really 'jack' with your thyroid, too.

I really would recommend a consult w/ a good doc or nutritionist. (but someone extremely schooled, experienced and knowledgeable). Truthfully, I don't really fully trust most of them, except Bisci.

I really hope you feel better and I'm sorry I wrote an epic novel here.

Morgan

Marilyn R Community Regular
Marilyn R
Posted

Three words of wisdom, learned on this forum.

SOY is evil. (For some, including me.)

And I have to add, since I can never do just three words, that soy is especially bad if you have thyroid issues or concerns.

Skylark Collaborator
Skylark
Posted

Your thyroid sounds OK. O.77 TSH is not a sign of hypothyroidism. T3 uptake can be low if you're on birth control pills. It can be a sign of hypothyroid, but not with your high T4. If your pulse is elevated all the time, you tend to be warm, you are agitated, or have a fine tremor you might be hyperthyroid, but your TSH isn't suppressed too badly.

It sounds to me like you are still having autoimmunity and malabsorption. For me, the autoimmunity tends to make me generally more prone to get ill, as will malnutrition. Are you still eating "gluten-free" breads and baked goods? The traces of gluten in them may be too much for you. You might try going super-careful on the diet and only eating naturally gluten-free whole foods.

I recently read that coffee, amaranth, and quinoa can cause trouble for some celiacs. Soy can be a problem for some folks too, especially if you haven't healed from the celiac.

Open Original Shared Link (Near the bottom.)

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,669
    • Most Online (within 30 mins)
      7,748
    CDR40
    Newest Member
    CDR40
    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

    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Medication

      By Scott Adams · Posted

      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
×
×
  • 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.