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

Does It Get Worse Before It Gets Better?


hal000

Recommended Posts

hal000 Rookie

Hi, I've been diagnosed with celiac disease (January 2009) and follow a strict gluten free diet, I didn't expect miracles and knew it would take time for the gut to repair itself but I feel ten times worse.

I've also got thyroid problems that aren't showing up in blood tests (docs think it's autoimmune thyroiditis), what's thrown me is that my thyroid symptoms have got worse since I've followed a gluten free diet not better.

I read somewhere that if you're taking Thyroid meds you my have to decrease the dose due to greater absorption through the gut (I'm not taking thyroid meds), do you think it's possible that now that my gut is better at absorbing nutrients it's affecting my antibodies with the automimmune thyroiditis?

My docs are not being much help with coming up with an explanation, ironically it was the thyroid problems that finally convinced me I could have celiac disease.

Sorry for the long message - I'm just at my wits end with trying piece the puzzle together, many thanks


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



Celiac.com Sponsor (A8-M):



MaryJones2 Enthusiast

I don't really have a formal answer for you but I know that my thyroid problems only became apparent after going gluten-free. I don't know if my thyroid necessarily got worse or it was just more noticable because everything else got so much better. I don't recall my doctor ever mentioning that increased absorption would require less medication either. Maybe someone else can shed some light on that one. I do have to adjust my medication based on the season.

RiceGuy Collaborator

My only thought is that many who are just starting out on the gluten-free diet have problems when they try to adopt too many gluten-free processed foods. It is often advised to start simple, to give the body time to heal. Plain veggies, fruits, legumes, meats, etc. Avoiding all those carb-rich gluten-free prepackaged breads, high sugar foods, etc can make a big difference. Also, many on this board have found additional intolerances after going gluten-free. So perhaps you're intolerant to something else in your diet, such as one or more top allergens, including dairy, soy, corn, eggs, nuts, etc. It is often recommended to try avoiding dairy at first, until the body heals.

Can you outline what your diet is like? Perhaps someone will spot something.

hal000 Rookie

Thank-you Janet, that's a very good point.

Hi riceguy........Mostly I'm on a paleo diet - organic chicken, broad beans, celery, fish, fruit - blueberry's, strawberries (I'm lactose intolerant so that's off limits).

The only gluten free processed food is some corn pasta twice a week (maybe cut that out) and the odd biscuit (2 a day). Looking at the packaging they do contain soya lecithin as an emulsifier but it seems like such a small amount it couldn't have this impact.

I think from what you say riceguy it's time to just stick to the un-processed foods and see how I go. If and when I improve in a few months I can start integrating other food stuff into the diet again.

I need to start taking on board just how sensitive the body is and how easily it can be thrown offcourse.

It's possible the thyroid could have got worse irrespective of the new diet, it's just a bit demoralising to feel worse.

RiceGuy Collaborator
Thank-you Janet, that's a very good point.

Hi riceguy........Mostly I'm on a paleo diet - organic chicken, broad beans, celery, fish, fruit - blueberry's, strawberries (I'm lactose intolerant so that's off limits).

The only gluten free processed food is some corn pasta twice a week (maybe cut that out) and the odd biscuit (2 a day). Looking at the packaging they do contain soya lecithin as an emulsifier but it seems like such a small amount it couldn't have this impact.

OK, while I don't usually go overboard with the goitrogenic avoidance thing, I'll just point out that beans and strawberries are said to have goitrogenic compounds. Supposedly corn does too, but not every list of such foods shows that. Tapioca is supposed to be as well, and it is in a lot of gluten-free baked goods.

Perhaps these articles will be of some help:

Open Original Shared Link

Open Original Shared Link

Incidentally, everything I've read about soy lecithin suggests that the goitrogenic compounds are not part of it. Apparently, lecithin is part of the lipid fraction, whereas the isoflavones are part of the protein fraction.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,964
    • Most Online (within 30 mins)
      7,748

    Cbear
    Newest Member
    Cbear
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      If black seed oil is working for his Afib, stick to it, but if not, I can say that ablation therapy is no big deal--my mother was out of the procedure in about 1 hour and went home that evening, and had zero negative effects from the treatment. PS - I would recommend that your husband get an Apple watch to monitor his Afib--there is an app and it will take readings 24/7 and give reports on how much of the time he's in it. Actual data like this should be what should guide his treatment.
    • Jacki Espo
      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
×
×
  • 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.