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

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

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.

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.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,043
    • Most Online (within 30 mins)
      7,748

    Churro
    Newest Member
    Churro
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • knitty kitty
      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
    • pothosqueen
×
×
  • 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.