Jump to content
Celiac Disease FAQ | This site uses cookies GDPR notice. Read more... ×
  • Sign Up
0
The Fluffy Assassin

Is There Any Reason Celiacs Would Need More Iodine Than Other People Do?

Rate this topic

Recommended Posts

In case you missed any of my thrilling story, here it is in a nutshell: All summer, I've been feeling very strange. I posted various interesting and elaborate and incorrect rationalizations of what might be going wrong. Eventually, I hit on the very, very obvious: that if you give up salting your food (like I did decades ago) and then start cooking nearly all your own food (like I did two years ago) and then switch to whole foods (like I did early this year) and then give up soy including gluten-free tamari (like I did in July) you're likely to trigger a pretty major electrolyte imbalance. I did take multivitamins which included 100% of the RDA of iodine, but as of a few weeks ago I had the brilliant idea to stop taking them on the grounds that maybe I was getting too much of some micronutrient, and wound up in the emergency room. They told me I was hypothyroid and to see a primary care physician within the week. I cut out all the goitrogens from my diet (broccoli, kale, millet, etc.), restarted my multivitamins (since replaced with kelp extract), started salting my food, and ate a lot of avocado and coconut, said to be good for hypothyroidism. And when within the week I went to a doctor, the labs said... thyroid normal. (TSH had been 7.310; now is 2.944.) (Some nutshell, huh?:))

However, I woke this morning feeling very cold; I've always been cold-natured. I wonder if I may have always been subclinical hypothyroid. I was taking the multivitamins half in the morning and half in the evening, which maybe helped. The kelp extract tablets aren't scored and would be difficult to cut in half as they're round. They contain 150% of the RDA for iodine. I'm wondering if there's any chance that celiacs just need more darn iodine. I believe that I read that iodine is taken in in the duodenum, the part of the intestine that is damaged by celiac disease, but I've been gluten free for nearly two years and would think I would have largely healed.

My pattern all summer has been (more or less) two good days, two bad days. After getting my iodine up, it became two good days, one bad day (and I was glutened for the first time in ages before the bad day). Now it's two good days, one fair day. So maybe iodine deficiency just takes a while to resolve, and I need to be more patient. But it would be lovely to have some answers. The clinic just pretty much washed their hands of me; you're normal, bye-bye. (Granted, I literally told the doctor when he asked what he could do for me that he could tell me I'm fine and everything is normal, but I'm pretty sure I made clear that I was kidding.)

So what are thoughts?

Edit: On further thought (with googling) I find that there is a reason autistic people would need more iodine, though nobody seems to say definitively that persons with Asperger's (like me) would. So there's a thought. Ravenwoodglass has mentioned that iodine can trigger dh outbreaks in sufferers; this kind of indicates that celiac wouldn't be the root of my apparent iodine uptake problem. Again, what are thoughts?

Share this post


Link to post
Share on other sites

This is interesting. I'll have to see how much iodine I get daily. I never use salt unless I eat french fries (once or twice a year). I'm on thyroid meds but maybe some iodine will help. I'll let you know how it works.

Share this post


Link to post
Share on other sites
This is interesting. I'll have to see how much iodine I get daily. I never use salt unless I eat french fries (once or twice a year). I'm on thyroid meds but maybe some iodine will help. I'll let you know how it works.

Be careful with it. I'm having my usual second and third thoughts. Since I've been losing weight ever since going gluten-free, one would think that if anything I'd be hyperthyroid. It's possible that the iodine in the multivitamins was just enough to make me hyperthyroid, that quitting them made me temporarily hypo and that restarting them made my TSH normal in time for the second blood draw. By now, I would be hyper again, and by that logic, the kelp would make me even more hyper. I'm certainly amped up a bit.

Then again, in general, I still feel just like I did when I went to the emergency room only less so. So I guess it's likelier that I'm again hypo (or still subclinical hypo). It's probable that all the weight loss was just due to eating healthier. (Prior to going gluten-free, I was a buffet hound.)

See? Second and third thoughts. One of the health food stores I visited had liquid kelp extract, which would presumably let you start with smaller doses. The tablets were either 150% or more of the RDA; it irritates me when vitamin/mineral/etc. manufacturers don't offer tablets with just 100% or less of the RDA. It seems to me that if I want to take more, I can just take two.

Share this post


Link to post
Share on other sites

Fluffy, I'm sorry that you're still struggling to find answers. I would find a new doc.. I don't know the first thing about iodine but what you're going through in general sounds somewhat familiar. The nurses in the office where I got tests for a UTI said to each other "she has diabetes" but a word was never said to me. They called me up and told be that I was neg, for UTI that was it, and the doctor never followed up. Then again, I was in the hospital overnight for obeservation and the nurses thought I was asleep but were talking to each other saying " she has diabetes or hypoglycemia or both, what're they going to do with her" "they'll have to put her on a pump"-because I have such a fear of needles. But again, not a word was said to me. When I finally followed up with a new Doc. I demanded testing. I guess I share those stories to show that the medical profession drops the ball and things can fall through the cracks. I always suspected it in part because, I thought I was just too darn sensitive to what kinds of foods I could eat and when and feel good. It seems to me that something is going on if you are so sensitive. Keep searching for answers and use those tests to your advantage. I hope you can find someone in the medical profession to be your ally! so that you aren't stuck in this continual circle of self diagnosis and experimenting.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
0

  • Top Posters +

  • Upcoming Events

    • February 27, 2019 04:00 PM Until 08:00 AM
      0  
       
       
       
      Celiac Emotional Healing Support Group
       
       
       
      Again you are invited to join Johnny Patout, LCSW for Baton Rouge's first emotional healing support group meeting to assist those living with celiac disease manage the emotional challenges so many of us face. Most often the emotional disturbances include depression, disinterest in normal activities, insomnia, grief, mood changes, anxiety, inability to concentrate, extreme concern about managing a gluten-free lifestyle and other emotional and behavioral challenges.
       
      The professionals at Jamestown Avenue Counseling Center created the emotional healing support group to give us a safe place to begin to process our emotions and support each other as we heal emotionally while managing celiac disease and the resulting autoimmune disorders.
       
      The emotional healing support group meets every Thursday, 6:00-7:00pm, at the Jamestown Avenue Counseling Center of Baton Rouge. Jamestown Avenue Counseling Center is located at 4637 Jamestown Avenue, Baton Rouge, Suite B-1. Suite B-1 is upstairs.
       
      The support group is free and open everyone managing celiac disease. For more information: emotionalhealingforceliacs@hotmail.com
    • March 24, 2019 Until March 27, 2019
      0  
      NEW ORLEANS GOURMET GLUTEN-FREE mini GETAWAY    March 24 ~ 27, 2019   We have arranged a fun and Gluten-free food filled mini in the city known for it's food and fun.  We have arranged to eat many of the famous dishes that aren't usually Gluten-free at a few of the World Renown restaurants.   Staying at the Royal Sonesta Hotel on Bourbon Street in the center of the French Quarter, you'll be able to enjoy the ambiance of the city at all hours.   Our itinerary will include a Luxury Coach tour of the city and surrounding area - Admission to The National World War II Museum, including the Tom Hanks" 4D film "Beyond All Boundaries" - an exciting Airboat ride and tour through the Bayou.      This it the 3rd time we have visited New Orleans and it has always been well attended, so join us even if you've been there before.  Check out our website for the complete itinerary and cost.    Due to contractual obligations we must have 20 participants by October 31, 2018 to make this a go.      If you have any questions just give us a call at 410-939-3218.  Bob & Ruth info@bobandruths.com (410) 939-3218
    • March 30, 2019 Until March 31, 2019
      0  
      Nourished Festival is a family-friendly event with 10 locations across the US. Attendees will be able to sample food, health and beauty products, meet with companies, learn about the most current food lifestyles, receive coupons and attend educational sessions with industry experts. 
      Nourished Festival, managed by The Nourished Group and presented by Enjoy Life Foods, is the largest gluten-free, allergy-friendly and specialty diet event in the US, with 10 locations including.
      ABOUT THE NOURISHED FESTIVALS
      Managed by The Nourished Group, formerly The Gluten Free Media Group, The Nourished Festivals are the largest and fastest growing special diet consumer events in the United States. Started in 2007, the events have expanded from one to ten cities throughout the country. The festivals cater to anyone looking to lead a healthier lifestyle or those who follow a specialty diet due to autoimmune conditions, food sensitivities, allergies or intolerances. Offerings including Paleo, Keto, Plant-Based, Gluten-Free, Allergen-Friendly and Nut-Free products. The events provide the opportunity for attendees to sample and purchase new products, receive coupons, meet with brand ambassadors and attend educational classes with industry experts. For more information, visit http://www.nourishedfestival.com 
       
  • Member Statistics

    • Total Members
      86,549
    • Most Online
      4,125

    Newest Member
    Patsy Mitchell
    Joined
  • Forum Statistics

    • Total Topics
      111,818
    • Total Posts
      955,917
  • Who's Online (See full list)

  • Forum Discussions

    For like $100 more, add the DGP IgA test as well.  The EMA is expensive because it is labor intensive (lab), so consider skipping that test.   Why find out if you have the MTHFR gene?    What is that knowledge going to do for you?  I have probably have the MTHFR gene.  My B-12 and Folate used to be off the chart when I was consuming soy milk that was fortified with cheap unmethylated forms of vitamins.    (I used soy milk before my celiac diagnosis because I was lactose intolerant).  I ceased all vitamin supplements and dropped any foods that were enriched  (or you can purchase more expensive methylated versions if you want to supplement) and those levels dropped down to normal levels.  I found that If I ate a normal healthy and varied diet and healed from celiac disease, I do not need supplements.   It appears that I was not able to process unmethylated vitamins because I might the MTHFR gene.  Just a theory.   Knowing I have the gene?  What is that going to do for me?  Will it change my behavior or save me from a new illness?  Can my doctor formulate treatments based on that knowledge?  Can he manipulate my genes?  NOT YET.  This might be beneficial in the future, but science is not there yet.  Just lots of websites trying to sell you vitamins.  Believe me, I have a family full of Autistic family members, so the MTHFR topic is of interest to me. Consider ruling out celiac disease first, address other issues that can impact joints like RA or Crohn’s), then eat a healthy diet that may or may not include gluten or processed food.  I have a friend who is on week three of the Whole 30 diet.  She ruefully confessed that she is feeling so much better.  In a few weeks, she will add foods back in that might be giving her issues.  I think she realizes that her Standard American Diet is not the healthy way to go.  Although she is happy about feeling significantly better, she is sad because she knows that she is going to have to give up all that junk food which seems to be making her sick.  I hope she moves forward because good health is priceless.      
    Thank you so much, cyclinglady. Yes, very helpful! I want to tell her the exact tests I want.  I am thinking I should request: tTG-IgA Total serum IgA Do you agree? I am on a super high-deductible health plan, so I end up paying for all of these, so I don't want to go overboard while still being as sure as I can be. Not related to celiac (as far as I know) but I was also reminded that my sister has the MTHFR gene mutation (homozygous C variant), so I need to ask her to be tested for that as well... She is going to think I am nuts, and that is fine. ;)
    Oh no!  One celiac test?  Only one was given?  The TTG IgA, I assume or you just got the Immunoglobulin A (IGA) test?  You should insist on the complete celiac panel.  You should also know that  some people with DH do not test positive on any of the celiac blood tests.  If your skin biopsies are negative, make sure they biopsy was taken correctly — not on the rash, but adjacent.  This mistake is make ALL THE TIME by dermatologists.   Because of what you disclosed in another post, you should consider asking a Gastroenterologist and not your GP (who seems to know little about celiac disease and testing) why you had small intestinal damage (per initial biopsies) went gluten free and later a second biopsy revealed a healed small intestine, yet you were not given a celiac diagnosis.   Later, it seems you started consuming gluten again or were getting traces of gluten into your diet, and now may have developed or worsened your DH. Quote: “Hi, I have been trying to get a celiac diagnosis for awhile now. I had an endoscopy years ago that showed flatted villi but the biopsy said "possible sprue or possible duodonitis." I went g.f. and had another test a few years later. The villi were normal but I had what I thought was a d.h. rash. The dermatologist said it did not look like d.h. and said it was just eczema.  To test myself, I started eating gluten again. I have occasional bowel issues but not like I had years ago.” Now my legs look like I have d.h. again.” You can go gluten free and safely prepare gluten in your house.  I did this for 12 years when my hubby was gluten free and before I was shockingly diagnosed.  You just can not ingest gluten.  The only thing you need to avoid is flour because flour has been documented to stay in the air or fall on surfaces for up to 24 hours (one reason not to have a coffee in a bakery or donut shop — sit outside!)  You can cook pasta, make sandwiches, open a box of cookies....whatever!  Just do not use loose flour.   If he needs a birthday cake, have a friend bake it at their house.  Or he may love a gluten-free cake.  Soon I will be baking my kid a gluten-free Chocolate Mayonnaise Cake for her birthday and she is not celiac!  She actually prefers it to a gluten-containing bakery cake!   There are plenty of alternate grains besides wheat, barley and rye for your son.  Think outside the box.   I have said this before you should get your son tested for celiac disease.  I have allergies and I never had a positive for wheat.  Wheat allergies and celiac disease are separate issues.  He may very well have celiac disease.  Why?  Because his mom had a positive intestinal biopsy and went gluten free and then had a repeat intestinal biopsy and healed.  I am not a doctor, but that is pretty damning evidence.  Maybe you need to consult with an attorney who specializes in malpractice.  You appear to have been put through a diagnostic nightmare.   I hope this helps.  Mothers need to take care of themselves first, so that they can help their children.  It is like the oxygen masks on an airplane.  Adults are instructed to put their mask on first before assisting others (e.g. children).        
  • Blog Entries

  • Blog Statistics

    • Total Blogs
      1,158
    • Total Entries
      2,010
×