Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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 Celiac.com!
    eNewsletter
    Donate

Not Healing.. Thyroid Problems?


amberlink09

Recommended Posts

amberlink09 Apprentice

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

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



cassP Contributor

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

Link to comment
Share on other sites
amberlink09 Apprentice

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!

Link to comment
Share on other sites
cassP Contributor

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

Link to comment
Share on other sites
  • 2 months later...
momof2peanutz Newbie

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

Link to comment
Share on other sites
Marilyn R Community Regular

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.

Link to comment
Share on other sites
Skylark Collaborator

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.)

Link to comment
Share on other sites

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,088
    • Most Online (within 30 mins)
      7,748

    Aventine
    Newest Member
    Aventine
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Anmol
      Thanks this is helpful. Couple of follow -ups- that critical point till it stays silent is age dependent or dependent on continuing to eat gluten. In other words if she is on gluten-free diet can she stay on silent celiac disease forever?    what are the most cost effective yet efficient test to track the inflammation/antibodies and see if gluten-free is working . 
    • trents
      Welcome to the community forum, @Anmol! There are a number of blood antibody tests that can be administered when diagnosing celiac disease and it is normal that not all of them will be positive. Three out of four that were run for you were positive. It looks pretty conclusive that you have celiac disease. Many physicians will only run the tTG-IGA test so I applaud your doctor for being so thorough. Note, the Immunoglobulin A is not a test for celiac disease per se but a measure of total IGA antibody levels in your blood. If this number is low it can cause false negatives in the individual IGA-based celiac antibody tests. There are many celiacs who are asymptomatic when consuming gluten, at least until damage to the villous lining of the small bowel progresses to a certain critical point. I was one of them. We call them "silent" celiacs".  Unfortunately, being asymptomatic does not equate to no damage being done to the villous lining of the small bowel. No, the fact that your wife is asymptomatic should not be viewed as a license to not practice strict gluten free eating. She is damaging her health by doing so and the continuing high antibody test scores are proof of that. The antibodies are produced by inflammation in the small bowel lining and over time this inflammation destroys the villous lining. Continuing to disregard this will catch up to her. While it may be true that a little gluten does less harm to the villous lining than a lot, why would you even want to tolerate any harm at all to it? Being a "silent" celiac is both a blessing and a curse. It's a blessing in the sense of being able to endure some cross contamination in social settings without embarrassing repercussions. It's a curse in that it slows down the learning curve of avoiding foods where gluten is not an obvious ingredient, yet still may be doing damage to the villous lining of the small bowel. GliadinX is helpful to many celiacs in avoiding illness from cross contamination when eating out but it is not effective when consuming larger amounts of gluten. It was never intended for that purpose. Eating out is the number one sabotager of gluten free eating. You have no control of how food is prepared and handled in restaurant kitchens.  
    • knitty kitty
      Forgot one... https://www.hormonesmatter.com/eosinophilic-esophagitis-sugar-thiamine-sensitive/
    • trents
      Welcome to the forum community, @ekelsay! Yes, your tTG-IGA score is strongly positive for celiac disease. There are other antibody tests that can be run when diagnosing celiac disease but the tTG-IGA is the most popular with physicians because it combines good sensitivity with good specificity, and it is a relatively inexpensive test to perform. The onset of celiac disease can happen at any stage of life and the size of the score is not necessarily an indicator of the progress of the disease. It is likely that you you experienced onset well before you became aware of symptoms. It often takes 10 years or more to get a diagnosis of celiac disease after the first appearance of symptoms. In my case, the first indicator was mildly elevated liver enzymes that resulted in a rejection of my blood donation by the Red Cross at age 37. There was no GI discomfort at that point, at least none that I noticed. Over time, other lab values began to get out of norm, including decreased iron levels. My PCP was at a complete loss to explain any of this. I finally scheduled an appointment with a GI doc because the liver enzymes concerned me and he tested me right away for celiac disease. I was positive and within three months of gluten free eating my liver enzymes were back to normal. That took 13 years since the rejection of my blood donation by the Red Cross. And my story is typical. Toward the end of that period I had developed some occasional diarrhea and oily stool but no major GI distress. Many celiacs do not have classic GI symptoms and are "silent" celiacs. There are around 200 symptoms that have been associated with celiac disease and many or most of them do not involve conscious GI distress. Via an autoimmune process, gluten ingestion triggers inflammation in the villous lining of the small bowel which damages it over time and inhibits the ability of this organ to absorb the vitamins and minerals in the food we ingest. So, that explains why those with celiac disease often suffer iron deficiency anemia, osteoporosis and a host of other vitamin and mineral deficiency related medical issues. The villous lining of the small bowel is where essentially all of our nutrition is absorbed. So, yes, anemia is one of the classic symptoms of celiac disease. One very important thing you need to be aware of is that your PCP may refer you to a GI doc for an endoscopy/biopsy of the small bowel lining to confirm the results of the blood antibody testing. So, you must not begin gluten free eating until that is done or at least you know they are going to diagnose you with celiac disease without it. If you start gluten free eating now there will be healing in the villous lining that will begin to take place which may compromise the results of the biopsy.
    • Anmol
      Hello all- my wife was recently diagnosed with Celiac below are her blood results. We are still absorbing this.  I wanted to seek clarity on few things:  1. Her symptoms aren't extreme. She was asked to go on gluten free diet a couple years ago but she did not completely cut off gluten. Partly because she wasn't seeing extreme symptoms. Only bloating and mild diarrhea after a meal full of gluten.  Does this mean that she is asymptomatic but enormous harm is done with every gram of gluten.? in other words is amount gluten directly correlated with harm on the intestines? or few mg of gluten can be really harmful to the villi  2. Why is she asymptomatic?  3. Is Gliadin X safe to take and effective for Cross -contamination or while going out to eat?  4. Since she is asymptomatic, can we sometimes indulge in a gluten diet? ----------------------------------------------------------------------------------------------- Deamidated Gliadin, IgG - 64 (0-19) units tTG IgA -  >100 (0-3) U/ml tTG IgG - 4   (0-5) Why is this in normal range? Endomysial Antibody - Positive  Immunoglobulin A - 352 (87-352) ------------------------------------------------------------------------------------------------ Thanks for help in advance, really appreciate! 
×
×
  • Create New...