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Heart Palpitations And Fatigue
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:unsure: I was first told i had IBS and just cut out pasta and bread, but the last 2 weeks I developed a itchy,blistery rash and severe fatigue and heart flutters,

I have not had any test done yet , but I found an article in readers digest and it fit me to a tee. so i started experminting with not eating anything with modified food starch or wheat flour or gluten. is this normal when first starting to not eat wheat?

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Laurie anne,

If you are seriously going to be tested for Celiac you can't go off wheat yet, because it can cause a false positive. I had been off but they made me go back on for the biopsy and to be honest after being off gluten for 3 months, I was even more sensitive :(. If you don't care about the diagnosis then by all means, stay off the gluten, dairy may be sensitive for you too. If you have flattened villi, you are lactose intolerant until those little buggers grow back.

I too have the heart fluttering and am exhausted all the time. Not having the nutrients your body needs really throws everything out of whack.

Hope you feel better soon :)

Lily

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Hi,

I am in the same boat as you are. I went off gluten, felt better and now am back on gluten for the biopsy (Tuesday.) My gastro Dr said my allergist shouldn't have taken me off gluten until the biopsy, but it's too late now. My fatigue was much better after 6 weeks gluten free. Even if the biopsy comes back negative, I have the gliadin antibodies so I guess it gluten free for me.

Good luck in your diagnosis. It's hard going back to foods that you think are making you sick. I wish there was a better way for us. :blink:

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B)

Hi thanks for the advice I don't see my doctor until wednesday and i don't have insurance so I don't know what test he will do. My biggest concern now is i'm not eating much and I'am taking vitamins but I itch on my neck sometimes it wakes me up at night and i almost scratch till i bleed, and suggestions on what to put on it??????????? I've tried beneadryl cream, cortizone, gold bond and neosporin. any other suggestions on what to do or what is causing this. I feel almost worse since i stopped eating things with gluten or modified food starch , i did'nt have the heart palpitaions or the heavy bone melting fatigue, i'm also irritilble.

how do other people deal with this. my husband tries to understand but my kids just know mommy is sick. I've tried almost all of the antidepressants out there.

I'm on clozampane now. Laurie anne

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re: Skin problems

I have been having terrible skin problems for years and I wonder if they are related to celiac disease -

1 - I have developed an extreme sensitivity to anything alkalai, such as soaps, this carries over to the water supply here, ph was at 8.2 at end of summer, 7.5 in the fall, I only use Poland spring water on my face, neck, and scalp, ph 5.5, and it helps -

2 - My skin will not tolerate the vehicle or base in most ointments and creams - causes horrible problems - I read one in three people are sensitive to Neosporin - I can use Johnson and Johnson First Aid Cream - I can use Vaseline Intensive Care Lotion if skin not broken

3 - The neck (if you can use soap) gets soap, runoff from shampoo, Shaving cream (guys), and shower spray - 4 alkaline substances I was exposing myself to - not good

4 - I was prescribed anti-depressants a couple years ago and the potential side effects sounded really scary so I didn't take them - could they be a problem?

5 - Look into relaxation techniques - I did a BioFeedback program a couple years ago and it really helps. Sometimes I just unplug phone, put on my noise suppresion muffs, or headphones and classical music, blanket to keep warm, get comfortable, and either try to blank my mind or think of something calming - it really helps, pulse and pressure go down, respiration down, calm down - you can be wide awake, but when you end the session I always feel like I just woke up, was warned to take it easy for a few minutes after rather than jumping right up -if you have children, a husband, and celiac disease you need a little quiet time - when I described a floating feeling to the therapist she said it was a common description, sometimes it's like I am not aware of my body being in contact with the recliner I'm sitting in

6 - I've noticed since going gluten-free (7 or 8 weeks) I'm a lotless antsy/irritable - are you better feeling taking meds than you were before?

Good luck on your test - I'm in the same boat - gluten-free prior to test, no insurance

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    • Squirmingitch, I forgot to mention best of luck to you during the storm! I hope you are safe and that your home isn't impacted too badly! I'm on the coast in SC so we will see some storms from it but nothing near as bad as what you will have. Take care and good luck.
    • SquirmingItch, I really appreciate you gathering info for me! To answer your questions, yes, I'm on Dapsone now and have been on it for about 4.5 weeks. I have been gluten free for the same amount of time. I started on 50 mg of Dapsone which didn't seem to help much. I spoke to my doctor about it and after about a week she raised it to 100 mg. Since then I did notice a huge improvement in both my rash and itch. I no longer have any active rashes and my itching isn't completely gone but it's very minimal. I have been getting weekly blood tests done and will soon be moving to monthly.  My DH skin biopsy was done before the gluten free diet and Dapsone. My results for the skin biopsy came back as inconclusive, but even with those results, my doctor was convinced I had DH. I specifically asked her about the fact that she took the biopsy directly from the lesion rather than next to it and if that affects the result. Her explanation was that if it's a fresh enough lesion that isn't scratched, there should be IgA antibodies present. But she said that an inconclusive result isn't surprising because the IgA antibodies come and go from the skin so quickly that it can be very difficult to get a positive result, even in someone who is positive.  That's when she decided to run the celiac blood panel on me. And even though those results came back positive for the deamidated gliadin and negative for tTg, she still is very convinced that I have DH. I am happy that my doctor seems to be certain, but I would just feel better if the results were more definitive. The one other thing I am waiting on is I have been asked to attend grand rounds at the local academic hospital in 2 weeks. I guess grand rounds is where all of the academic dermatologists and dermatopathologists get together to review certain complicated cases. They will meet with me, review all of my pictures, biopsies and blood tests. My situation has been so complicated so they asked me to come. I am hoping maybe then I will get some more answers. 
    • It sure is, it really is. 
    • shellyb, I have info. for you & you may yet be able to get an official dx from your dermatologist as she sounds like she would be willing to learn. If you are dx'd with dh it is definitive & no other testing is needed. You don't need to see a GI. Im in FL & have had a long day watching Tropical Storm Hermine & making preparations for it's track which is over where I live. I'm tired! I will have links for you to reputable medical info. on the rash but it make take me till tomorrow or even longer if we lose power.  I'll be back as soon as I can. Question: You're on Dapsone now? How long have you been on it? How is it working for you? Are you getting the proper testing at regular intervals to make sure it isn't doing bad things to you? Were you gluten free before the skin biopsy?
    • Thank you so much for your quick response, GFinDC. While I wouldn't be completely opposed to another skin biopsy, I already had 4 done (3 were done prior to my dermatologist suspecting DH) so I don't love the idea of  yet another hole and scar on my body. Plus, fortunately I don't have any fresh lesions now, which I believe is needed for the biopsy. I wish I would have known to see a GI before going gluten free but I was so desperate to get any relief that I started that and Dapsone as soon as my doctor mentioned it to me.  My rash is definitely symmetrical and I have it in all of the "classic" DH spots although it basically spread over my entire body. As much as I'd like a more formal diagnosis, I really don't think I can go through all of that again. It was so bad that not only was I getting no sleep but I had to change my sheets every morning because there was blood all over them. Sorry, TMI. The worst part is that this all developed during my ninth month of pregnancy and got much worse after I delivered my baby. So not only was I dealing with this insanely itchy rash but I had a newborn and a toddler to take care of.  My daughters' pediatrician did mention doing DNA testing on me first and then my daughters to see if there's any concern that they may be susceptible. I may just go that route for now. I was just curious if others have had similar test results to mine and how did their doctors treat it? Thanks again!
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