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 Our Content
    eNewsletter
    Donate

Thyroid Issues And Celiac?


Jolanta

Recommended Posts

Jolanta Newbie

I have been dealing with symptoms that include chronic diarrhea that is the absolutely worst! I have been dealing with anemia and a slew of other issues! Well, my primary decided to test my thyroid and looks like I am hyper. I have gone to the Endocrinologist and have been diagnosed with Graves Disease. After stopping gluten now for almost 1- 1/2 months, I feel wonderful! My thyroid is actually repairing itself. Also, my blood pressure has gone from a constant 160/90 to 110/80!

The primary even stated that I will probably be taken off meds for blood pressure and I probably do not have Graves disease!!!! My primary told me that I definitely have celiac. I was tested for celiac, but since I have been gluten free for this period, all tests came back negative. She does not think I need any additional tests. She said this is proof enough!

I did see a Gastro and he thinks I should be tested anyway - endoscopy and colonoscopy. I feel that these are just very nice expensive tests for the doctor to get reimbursed, and that I should probably just follow my primary doctors recommendations.

What do you think? Should I have the tests? Or does this prove that I have celiac?

Jolanta


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



Celiac.com Sponsor (A8-M):



CarlaB Enthusiast

Welcome!!

If you've been off gluten for some time, those other tests will probably be negative as well. I don't know why they're wanting to do more tests as dietary response IS clinical proof. I wouldn't bother. You feel better, and your primary doc is working with you on it.

Jolanta Newbie
Welcome!!

If you've been off gluten for some time, those other tests will probably be negative as well. I don't know why they're wanting to do more tests as dietary response IS clinical proof. I wouldn't bother. You feel better, and your primary doc is working with you on it.

That's exactly how I feel. But, there is always that little voice saying maybe it's something else. But, as you said, the diet is proof itself. My blood pressure has not been so low in over 5 years. I've been battling chronic diarrhea and unexplained anemia even longer. The docs always said the anemia was since I was a woman and had my periods. Hmmm...

I will be seeing the Endo in December and will see if the thyroid has gone back to normal. Seems that I have many antibodies... Graves or Hashimoto. Doctor said Graves most likely.

We will see... Has anyone heard of Celiacs having Graves???

Jolanta

Canadian Karen Community Regular

Hi! Welcome to the board!

I agree that the tests will basically be worthless anyway, now that you are gluten free. Even if you were still consuming gluten, the endoscopy and biopsies are basically a hit and miss situation, depending on the amount of damage done. If the damage is only sporatic, then in all likelihood the spots they pick to biopsy very well may not be the damaged parts and will come up as a false negative.

Dietary response is the most important indicator, IMO.

I have hypothryoidism, so it's a bit different from yours. I can tell you about the chronic diarrhea though, since I have not had anything but water for a BM for over a decade! The doctor also found (during the colonoscopy) that I have collagenous colitis. It can only be diagnosed via biopsy as it can only be seen by a pathologist through a microscope. Here is a link you might find interesting:

Open Original Shared Link

Oh, maybe PM KaitiUSA, I believe she has Graves......

Karen

Nancym Enthusiast

Wow! That's' terrific. I wish I had known about the gluten/thyroid thing almost 20 years ago. Dr. Fine says that 30% of thyroiditis sufferers can go into remission on a gluten-free diet. But I went and had RAI done. :(

But I am so happy for you!

Ruth52 Newbie

I'm very pleased that you are feeling well. An overactive thyroid makes life really difficult. Hopefully your recovery will continue and you will be back to full health before you know it.

I was diagnosed with Graves Disease in early 2004 and was put on medication. I had a dream run through to remission, only needing to be on medication for 11 months. My thyroid levels have been constant for the past two years.

I didn't know anything about Celiac Disease or Gluten Intolerance until my cousin told me about how it effected her. It was like an awakening - what she described was exactly how I had been feeling for a couple of years. I started to dable in eating gluten free in September 2004. I say dable because I would do it for a few months, feel really great and go back to the gluten diet only to get sick again. Anyway the long and short of it is that for the past twelve months I have been totally gluten free and have finally got back the stamina that I lost through a combination of Graves Disease and Gluten Intolerance.

I know there is a lot of debate about whether or not a gluten-free diet can improve thyroid disease , but I because I have stayed in remission (Graves Disease) for two years I am a believer.

Jolanta Newbie

I am relieved to hear that there is some hope out there. I have been having so many issues that my life is just so crazy! I have a pretty stressful job and have been dealing with anxiety on top of all this. I was NOT able to drive my car for over a 2 years. My husband would drive me everywhere. Being diagnosed with something was a relief that this was not all in my head! It was real! and stopping gluten made such a difference.

I wish the best for you. Sounds like we are all finding the right path!!!!!!

Jolanta


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



Celiac.com Sponsor (A8-M):



Nancym Enthusiast

When I was hyperthyroid I was wired all the time and had a hair-trigger temper. My anxiety levels were astronomical. It was like running on adrenoline constantly.

Well, anyway, hope you have the thyroid thing beat!

georgie Enthusiast

Jolanta, I have Thyroid and Celiac. ( think its celiac). Some Drs don't have a clue re Hashis. With Hashis you alternate between hyper and hypo as your thyoid dies. You need Armour meds to suppress the Antibodies attacks.Synthetics don't work very well. My guess is that you have Hashis as that goes with Celiac a lot. I haven't had all the tests for Celiac. My Dr thought it wasn't necessary for me. But read this site to learn about Thyroid www.stopthyroidmadness.com

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - cristiana replied to Betsy Crum's topic in Related Issues & Disorders
      6

      Chest pain from celiac

    2. - Dora77 posted a topic in Coping with Celiac Disease
      0

      Ocd making gluten fears unmanageable. Need advice

    3. - lmemsm posted a topic in Gluten-Free Recipes & Cooking Tips
      0

      beans in dessert recipes

    4. - lmemsm replied to bluebird2032's topic in Gluten-Free Recipes & Cooking Tips
      2

      Gluten free/ non dairy , low calorie pudding

    5. - lmemsm posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Finding gluten free ingredients


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,290
    • Most Online (within 30 mins)
      7,748

    Roxanne T
    Newest Member
    Roxanne T
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      My chest pain has been caused by costochondritis, as well as times when iron supplements has given me such bad bloating it has put pressure on my back and chest, and reflux can do the same. Also, along the lines of Wheatwacked's suggestion above, is it possible you had an injury to your chest/ribs way back that is being set off by either some sort of gastrointestinal bloating/discomfort? I distinctly remember really hurting a rib over forty years ago when I misjudged a wall and thought it was just behind me but in fact it wasn't.  I fell badly against the wall and I think I cracked a rib then.  For some strange reason I didn't tell anyone but I think had I gone to hospital an X-ray would have revealed a fracture. I think that rib has not been right since and I am sure that bloating makes it worse, as well as heavy lifting.
    • Dora77
      Sorry for the long post. I’m 18, and I was diagnosed with celiac disease and type 1 diabetes (T1D). My transglutaminase IgA was >128 U/mL, EMA IgA positive twice, and I’m HLA-DQ2 and DQ8 positive. I’ve been completely asymptomatic since diagnosis, even when I cheated with gluten sometimes in the past and used to eat out(2-5 years ago) I don’t get the typical celiac reactions, which makes it really hard to know when (or if) I’ve been glutened. But for the past year, I’ve been the most strict with my diet, and that’s also when a bunch of new issues started. I eat completely glutenfree, never eat out, dont eat food that says „may contain gluten“.   Current Health Problems • Floating, undigested stools for over a year now. Dont think its related to celiac as it was like this since im 17 and not 13-16( i got diagnosed at 13). • Chronic back pain started gradually, worsens with movement, lots of cracking/popping sounds. Been ongoing for a year now. First noticed in the gym. • Abdominal bulge on the right side, not painful but seems to be getting slightly bigger. Doctor didn’t find a hernia on ultrasound, but it was done lying down (I’ve read those can miss hernias). Noticed it like 6 months ago, couldve been there longer. • extremely dry and mildly swollen hands (this started before I started excessive hand-washing), and bloated face. • Signs of inattentive ADHD (noticed over the past 3 years), now combined with severe OCD focused on contamination and cross-contact. • Growth/puberty seemed to started after going gluten-free. Before that I was not developing. Dont know if any of these are because of celiac as my dad doesnt have those and he is a lot less strict gluten-free then me. I also had pancreatic elastase tested four times: values were 46 (very low), 236, 158, and 306 (normal). Gastroenterologist said one normal value is enough and I don’t have EPI. Family doctor prescribed Kreon anyway (after I pushed for it), and I just started taking 1 capsule (10,000 units) with meals 2 days ago, but couldn‘t see effects yet because I’ve been constipated the last few days. Maybe because of thyroid. I don’t have Hashimoto’s. No thyroid antibodies. But I took levothyroxine for slightly low FT4 levels. My thyroid levels fluctuated between borderline low and low-normal. And recently lowered my dose so that may have caused the constipating. I probably didn’t need it in the first place, and am thinking about stopping it soon.   Current Diet Right now, I only eat a very limited set of “safe” foods I prepare myself: • Gluten-free bread with tuna or cheese • Milk and cornflakes • gluten-free cookies/snacks • Bananas (the only fruit I trust right now) I rarely eat other fruits or vegetables, because I’m scared of contamination. My dad, who also has celiac but doesn’t care about CC, buys fruits, and he might’ve picked them up right after handling gluten bread. That makes me feel unsafe eating them. Even fruit at stores or markets feels risky because so many people with gluten on their hands touch them.   My Home Situation (Shared Kitchen) We’re a family of 5. Only my dad and I have celiac. He eats glutenfree but doesn’t care about CC and sometimes (but rarely) cheats. My mom and siblings eat gluten bread at every meal. My mom is honest (so if i ask her to be cautious, she most likely would try to), but doesn’t seem to understand how serious celiac is. She: • Stopped using gluten flour • only cooks gluten-free meals (but they still heat up gluten bread and also cook gluten noodles) • Keeps separate butter/jam/jars for me • Bought me a stainless steel pan Bu we didn’t replace old wooden utensils, cutting boards, or other pans. The new they bought me pan was even carried home in a shopping bag with gluten bread in it, which triggered my OCD. It also has a rubber handle and I’m scared it might still hold onto gluten. Even if it’s washed well, it’s stored next to other pans that were used for gluten food/bread. Our kitchen table is used for eating gluten bread daily. My mom wipes it but not with soap. I’m scared tiny particles remain. If she made gluten-free bread dough on a board at the table, I’d still worry about cross contmaination contamination even with something under the dough and on the table as at one point the dough would probably touch the table. So I stopped eating anything she makes.   I know OCD is making it worse, but I can’t tell how much of my fear is real and how much is anxiety. Examples: • I wash my hands 20–30 times a day — before eating, after touching anything at home or outside, after using my phone/laptop. • I don’t let others touch my phone, and I’m scared to use my laptop because friends at school or my brother (who eat gluten) have touched it. And it annoys me a lot when others touch my stuff and feels like it got contaminated and is unsafe instantly. • I stopped eating while using my phone or laptop, afraid of invisible gluten being on them. • I wash my hands after opening food packaging (since it was on store cashier belts where gluten food is placed). • I avoid sitting anywhere except my bed or one clean chair. • I won’t shake hands with anyone or walk past people eating gluten. • At school, when switching classes, I wash my hands before getting out my laptop, again before opening it, etc. • I open door knobs with my elbows instead my hands   Job Concerns (Powder Coating, Sandblasting, Etc.) I’m working a temporary job right now that involves: • Powder coating • Sandblasting • Wet spray painting • Anodizing There’s also a laboratory. I don’t need this job, and my OCD makes me believe that dust or air particles there might contain gluten somehow. Should I quit?   Doctors Haven’t Helped My family doctor told me: “Asymptomatic celiac isn’t serious, if you have no symptoms, your intestines won’t get damaged, so you don’t need a gluten-free diet.” I knew that was wrong, but he wasn’t open to listening. I just nodded and didn‘t argue. My gastroenterologist (who’s also a dietitian) said: „If your antibodies are negative, there’s no damage. It might even be okay to try small amounts of gluten later if antibodies stay negative.“ Also said, pepper that says “may contain gluten” is fine if it only contains pepper. She was more informed than my family doctor but didn’t seem to fully understand celiac either.   Questions I Need Help With 1. Is it realistically safe to eat food my mom cooks, if we get separate pans/ and boards even if gluten is still used in the same kitchen? There will always be low risk of cc chances like that she will still touch stuff that was touched by her and my siblings after they ate gluten. And as there are gluten eaters in the house and she also prepares and eats gluten. So would opening the fridge then getting the food and touching the food be okay? So basically what i am doing, washing my hands multiple times while preparing food, she would only wash it once before, then touch anything else (for example water tap or handles) that were touched with gluteny hands, then also touch the food. I dont know if I ever could feel safe, I could try telling her how important cc really is. And I trust her so she wouldnt lie to me then be careless about cc, but idk how safe it really can be if she and everyone else keeps eating gluten and touching stuff in the house after eating. 2. Do I need to worry about touching doorknobs, fridge handles, light switches, etc. that family members touched after eating gluten? What about public places like bus handles or school desks? Or like if i went to the gym, I would be touching stuff all the time, so there will be small amounts of gluten and those would get transferred on my phone if I touch my phone while in the gym. But I want to knos if it would be enough to do damage. 3. Is an endoscopy (without biopsy) enough to tell if my intestines are healed? I’d pay privately if it could help and if i dont get a refferal. Or do i need a biopsy? 4. Could my job (powder coating, sandblasting, etc.) expose me to gluten or damage my intestines through air/dust? 5. Do I need certified gluten-free toothpaste, hand soap, shampoo, or moisturizer? (For example: Vaseline and Colgate don’t contain gluten ingredients but say they can’t guarantee it’s gluten-free.) 6. Is spices like pepper with “may contain traces of gluten” safe if no gluten ingredients are listed? Or does everything need to be labeled gluten-free?  7. Is continuing to only eat my own food the better choice, or could I eventually go back to eating what my mom cooks if she’s careful? 8. is cutlery from dishwasher safe if there are stains? Stuff like knives is used for cutting gluten bread or fork for noodles etc. I often see stains which i dont know if its gluten or something else but our dish washer doesnt seem to make it completely clean. 9. I wash my hands multiple times while preparing food. Do i need to do the same when touching my phone. Like if i touch the fridge handle, I wash my hands then touch the phone. I dont eat while using my phone but i leave it on my bed and pillow and my face could come in contact with where it was.  10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers. 11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten.  12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc. I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore. Thanks for reading.
    • lmemsm
      I've been making a lot of black bean brownies lately because it's one of the few gluten free dessert recipes that actually tastes palatable.  I've also seen chocolate cake recipes with black beans.  Someone mentioned a cookie recipe using lentils in place of flour.  Just wondering if anyone's run across any tried and true recipes using beans, lentils or peas for desserts?  I've seen a lot of recipes for garbanzo flour but I'm allergic to garbanzo beans/chickpeas.  Was wondering if adzuki or pinto beans might be useful in replacing some or all of the flour in baking.  Since gluten free flours can be crumbly was hoping the beans might help produce a better, less crumbly consistency.  Any recommendations for recipes?  Thanks.
    • lmemsm
      I've seen a lot of recipes for chia pudding, so I decided to make some with chia, water, cocoa and honey.  Didn't like the taste, so I added ground sunflower and ground pumpkin seed to it.  It tasted okay, but came out more like frosting that pudding.  I used to make pudding with tapioca starch, milk powder, water and sugar.  It came out very good but I haven't figured out what to use to replace the milk powder to make it dairy free.  Most starches will work in place of tapioca starch but quantity varies depending on the type of starch.  If I didn't add enough starch to get a pudding consistency, I'd add gelatin as well to fix it.  Avocado and cocoa makes a good dessert with a pudding like consistency.  Unfortunately, I have a bad reaction to avocados.
    • lmemsm
      Seems like when I find a gluten free product I like, the producer stops manufacturing it and then I have trouble finding a new gluten free source for it.  What's worse, I've been contacting companies to ask if their products are gluten free and they don't even bother to respond.  So, it's making it very hard to find safe replacements.  I was buying teff flour at nuts.com and they no longer carry it.  I noticed Naturevibe has teff and soy flour.  However, I can't get a response as to whether their flours are safe for someone with celiac.  Can't get a response from Aldi if their peas are safe for someone with celiac either.  I know Bob's Red Mill has teff flour but was hoping to get a large quantity.  I've been using up the 20 ounce Bob's Red Mill teff flour too quickly.  Does anyone know of a good source for teff or soy flour?  Any recommendations where to get gluten free beans, peas or lentils?  I found some packages of gluten free beans at Sprouts but not much variety.  I've also been looking for lentil elbow macaroni and it seems like no one is making that now that Tolerant was bought out.  Any suggestions for safe sources for these types of ingredients.  Thanks.
×
×
  • Create New...