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Not Healing.. Thyroid Problems?


amberlink09

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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


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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

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!

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

  • 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

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.

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.

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    • trents
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    • catnapt
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    • trents
      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
    • trents
      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
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