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

Hello And I'm Confused


rubydoo

Recommended Posts

rubydoo Newbie

Hi there, I'm new here and have a lot of questions.

Some history...I've had Sjogren's syndrome for 27 yrs now and counting....tons of other chronic illnesses on top of it. All have been managed okay for the most part until I hit menopause a few years ago. I've been tested for celiac both with blood tests and biopsy. All negative. Did the entrolab too.

I read the article in the newsletter about the person who tested negative for everything but went gluten free and felt better.

My main question has to do with chills. Even tho I've on HRT, I get awful chills in the a.m. and afternoons. The afternoon chills have occured since my late 20's (Sjogren's diagnosis). I can't understand why I'm getting them worse even tho I'm on HRT....the gynecologist says they're due to menopause.

The other question has to do with what to eat if I am to go gluten free. I've read everything there is and most of just can eliminate gluten in all shapes and forms. I am lactose intolerant, can't eat eggs, can't have acidic foods and beverages, etc. I do eat gluten free cereal and fruit with soy milk in the a.m. Do eat salads (no dressing) and some sort of protein in the afternoon and something similar in the evening. I need to lose weight but haven't lost an inch.

Ideas on all please.

Thanx a million!


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



Celiac.com Sponsor (A8-M):



Takala Enthusiast

Hi there.

Going gluten free really helped my eyes with this.

Could be you are borderline low thyroid, which is another possible, wonderful complication of gluten intolerance/celiac.

Soy depresses thyroid function, so you may want to try switching to another alternative milk product. You may also want to get tested for thyroid levels and antibodies.

The lactose/dairy intolerance and problems with acid foods might go away after you heal up, if you are gluten intolerant but stick with a gluten free diet. I can tolerate yogurt and hard cheeses, which are practically non lactose.

There are egg substitutes that can be used for baking, you can do a search on the forum, there is also another gluten-free food blogger or 2 that don't eat eggs because of either allergies or because they are vegan, and you can raid their recipes.

I'm not on any HRT because I hate how I react to the stuff, but I cannot easily regulate my body temperature either, and it's a trip. Exercise helps some. I live in a place where it gets very hot in the summer, and this helps condition my body to react better. Regular people don't get excited when they finally break a sweat. Depending on which chemicals you are putting into yourself, you may want to try natural alternatives.

happygirl Collaborator

If you have foods you need help finding a replacement for, let us know.

Meats/poultry/fish, fresh veggies and fruits, corn tortillas, rice, beans, are all gluten free. Lots of options. Let us know what specifics you need help with.

Welcome to the board!

Liveenjoylife Apprentice

If I can add, chills may be knocked out if you eat some protien an hour before going to bed, depending when you go to bed. Like chicken, bannanas. I found this to be most helpful when I was getting chills, which is not uncommon with people who have c.d.

I am having a hard time losing the weight I have gained since having celiac disease. Some advise I may be able to give is to not eat after 8pm. Eat more filling foods that are not necassarily high in carbs, such as salads with tofu, very good and it holds me over, grilled chicken veggies and of course fruits. You may even want to see a nutrionist. Don't be afraid to talk to people who work at the grocery store. I have found them to be most helpful and most have nutrionists on hand, like whole foods market:)

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,956
    • Most Online (within 30 mins)
      7,748

    ramonaja
    Newest Member
    ramonaja
    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

    • 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
    • DebJ14
×
×
  • 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.