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

Help


Guest Tish

Recommended Posts

Guest Tish

I was diagnosed with Celiac sprue in May and was relieved for the past 14 + years this was not all in my head. I went on a all protien diet at first not knowing what I should eat?? I live in a very rural area and gluten free just was not a issue in fact the hospital dietian only had one other patient that was a celiac at that time. So I have had to learn on my own the hardway and now I am very sensitive to gluten but I have several other things happening that I am not sure is related to being a celiac so I need to ask all of you ..

1) I sometimes break out in the itchies from top to bottom... I had seen a dermotologist and they biospied me but did not find what they are looking for.. At the time I had three hershey bars (one a day) then later found out candy is often dusted with flour and do not list it as a ingredient... I am taking allergy medicine every other day to prevent a scratch attack .. Has anyone else had this problem ?

I did break out last week with little bumps mostly unvisible in the back of my knees down to my ankle... called the dermotoligist and she said nothing to worry about.... Weird...

2) I began having some pain in my tail bone then pain in my wrist joints. The doctor gave me a athritis test and x-rayed my tail bone and said I was fine. Last night the pain was horrible in my shoulder bones, arm joints, wrist and all the bones in my fingers.. Has anyone experienced such pains ?

3) I am very active and exercise vigorously 7 days a week usually and had lost a lot of weight prior to this whole celiac bizz on my own... but when I finally found a bread that I can finally choke down I gained 10 pounds and I am afraid to gain anymore... any suggestions ? Most celiacs I have read about are worried about being so thin, wish I had that problem.

I know I should be able to get this information from my doctor but this last visit he though the only food I was to avoid was wheat... Boy that really worried me. Please give me some advise I could use........


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



Celiac.com Sponsor (A8-M):



Guest LisaB

I too have had all kinds of changes/wierd things happening since going gluten-free. My skin has totally changed, I am often itchy and get rough dry skin off and on, mostly on. My skin was never dry before, I wasn't itchy before. I get very wierd joint pain and other pain and then it goes away but I also feel stronger everyday. My theory is that things are working themselves out now that it is getting some nutrition.

Maybe working out so heavily isn't such a good idea right now, your body may need time and energy to catch up internally before devoting so much to muscle output? My belief is that it is good to keep moving, your lymph system cannot function to move waste unless there is some movement, but if there is too much waste to move to quickly along with other biological functions that need to start running properly and organs/glands that need to get the nutrition your hopefully now absorbing...that is a lot to ask of your system. Just a possibility.

EmilyP2004 Newbie
I was diagnosed with Celiac sprue in May and was relieved for the past 14 + years this was not all in my head.  I went on a all protien diet at first not knowing what I should eat?? I live in a very rural area and gluten free just was not a issue in fact the hospital dietian only had one other patient that was a celiac at that time.  So I have had to learn on my own the hardway and now I am very sensitive to gluten but I have several other things happening that I am not sure is related to being a celiac so I need to ask all of you ..

1) I sometimes break out in the itchies from top to bottom... I had seen a dermotologist and they biospied me but did not find what they are looking for.. At the time I had three hershey bars (one a day) then later found out candy is often dusted with flour and do not list it as a ingredient... I am taking allergy medicine every other day to prevent a scratch attack .. Has anyone else had this problem ?

I did break out last week with little bumps mostly unvisible in the back of my  knees down to my ankle... called the dermotoligist and she said nothing to worry about....  Weird...

2) I began having some pain in my tail bone then pain in my wrist joints.  The doctor gave me a athritis test and x-rayed my tail bone and said I was fine.  Last night the pain was horrible in my shoulder bones, arm joints, wrist and all the bones in my fingers.. Has anyone experienced such pains ?

3) I am very active and exercise vigorously 7 days a week usually and had lost a lot of weight prior to this whole celiac bizz on my own...  but when I finally found a bread that I can finally choke down I gained 10 pounds and I am afraid to gain anymore... any suggestions ?  Most celiacs I have read about are worried about being so thin, wish I had that problem.

I know I should be able to get this information from my doctor but this last visit he though the only food I was to avoid was wheat... Boy that really worried me.  Please give me some advise I could use........

It is possible you may have Dermatitis Herpetiformis

Dermatitis Herpetiformis is a rare condition with a very itchy rash.

DH associated with Coeliac Disease.

It is, however, difficult to diagnose and not many skin specialists understand about it.

You can see examples & descriptions of DH & ask for advice on this website.

Open Original Shared Link

Bone pain can indicate low bone density which is a risk for coeliacs.

Have you had a DEXA scan? This can show the state of your bones.

Please see :

Open Original Shared Link

I used to be underweight before diagnosis. Then I could eat any food & it would rush through me as my body tried to get rid of the gluten.

When you are diagnosed with celiac disease your body can recover on the gluten-free diet & it absorbs more, including the calories!

However, being overweight could indicate a thyroid problem which is sometimes found in coeliacs, so you might want to have your thyroid checked - but I think you may find you are just absorbing more food now your guts are healing.

gaceff Newbie

Careful with low calcium intake: celiacs tend to improperly absorb calcium and also eliminate milk products from their meals. Just be sure you get enough calcium (1g per day is needed, I believe, check other sources too).

And yes, I, too, suffer from different forms of skin problems (incl dandruff), that get worse when my digestive problems get more severe, and I'm pretty sure they are related. However, you indicate even worse symptoms than I ever had, so you should have a trip to a city with better doctors to check your condition.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,960
    • Most Online (within 30 mins)
      7,748

    Noa
    Newest Member
    Noa
    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.