Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Ever Changing Symptoms Of Celiac


Carla H

Recommended Posts

Carla H Newbie

I was diagnosed gluten intolerant in July/August 2011 and started to eat gluten free at that time. They ran blood work late September which "most likely" indicated I was celiac. They told me the only certain way to be sure was to start eating gluten again for a month at least and do the blood work/biopsy to be sure. I really didn't want to put my body through even more pain so opted to consider myself celiac with the support of doctor and began this journey.

The big question I have is new symptoms that creep up. I normally had the stomach issues with pasta, bread, etc. so I avoided those foods. Now that I'm told to eat gluten free, and really try to but its in everything and sometimes I've made mistakes.

So I've had new issues come up from a new rash on my legs and arms that is unbearable to aches and pains throughout my body and just overall not feeling well. is this normal or could I possibly have yet another issue. I am asthmatic and allergic to peanuts and most fish although since eating gluten-free my asthma has been much better, go figure.

Anyone else deal with new problems after their diagnosis??


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



Celiac.com Sponsor (A8-M):



eatmeat4good Enthusiast

My son's asthma completely went away when he went gluten free. He has had severe asthma his whole life. Go figure. All that prednisone and antibiotics and inhalers were for nothing.

Yes, you can become increasingly sensitive to gluten. This sounds like what is happening to you. If your rash is Celiac DH, you will have to limit iodine in addition to watching for trace gluten. This rash is extremely sensitive to gluten and iodine. Your other symptoms of generally feeling really unwell are also consistent with what we call a "glutening." Your body will present you with a myriad of symptoms and often they are not recognized as being a result of gluten until you have started being gluten free and then you begin to make the connections between strange symptoms and episodes of glutening.

Be sure you read all labels twice and get rid of any gluten in your kitchen if you can. Pots, pans, toasters, kissing someone who eats gluten, touching gluten food and then touching your own food. All of these can "get" you. Be sure not to use wheat flour or allow it to be used in your home. You can inhale the suspended particles of flour and become very ill when they are inhaled and make their way to your stomach. I learned all this the hard way. I had read about cross-contamination but didn't believe I would be that sensitive. Indeed I am. So I just wanted to make you aware of how awful even traces of gluten can make you feel. Hope you feel better soon.

Carla H Newbie

Thanks so much for the input, was to the doctor today for newest rash (not the DH but she said Celiac can"present" in different forms. They now want me to go to endocronlogist they suspect I may have thyroid issue on top of everything else plus see a nutritionist as I've dropped of bunch of weight not eating gluten. Who knew eating gluten would put weight on? but since I'm gluten-free now I've dropped weight too quickly.

I figured the toaster was probably an issue but the pans?? can't I just clean really and not cook gluten in them going forward? I still have gluten-free eaters in the home but mostly we cook gluten-free anymore. too much of a bother to cook two separate meals.

AVR1962 Collaborator

I was diagnosed gluten intolerant in July/August 2011 and started to eat gluten free at that time. They ran blood work late September which "most likely" indicated I was celiac. They told me the only certain way to be sure was to start eating gluten again for a month at least and do the blood work/biopsy to be sure. I really didn't want to put my body through even more pain so opted to consider myself celiac with the support of doctor and began this journey.

The big question I have is new symptoms that creep up. I normally had the stomach issues with pasta, bread, etc. so I avoided those foods. Now that I'm told to eat gluten free, and really try to but its in everything and sometimes I've made mistakes.

So I've had new issues come up from a new rash on my legs and arms that is unbearable to aches and pains throughout my body and just overall not feeling well. is this normal or could I possibly have yet another issue. I am asthmatic and allergic to peanuts and most fish although since eating gluten-free my asthma has been much better, go figure.

Anyone else deal with new problems after their diagnosis??

Yes, after I went gluten-free, my muscles and bones ached and still do from time to time now. I had the stiffest neck for a long time. Since diagnosed I have had problems with the planter's faciitis in my left foot, podiatrist said that with celiac he was not surprised as it effects the muscles, joints and connective tissues. I have been taking extra magnesium, potassium, and manganese to help my muscles. The supplements have eased my problem but they still are not gone.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,255
    • Most Online (within 30 mins)
      7,748

    Miss Betty
    Newest Member
    Miss Betty
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      We have a category of articles on this topic if you really want to dive into it: https://www.celiac.com/celiac-disease/miscellaneous-information-on-celiac-disease/gluten-free-diet-celiac-disease-amp-codex-alimentarius-wheat-starch/
    • Scott Adams
      I agree with @trents, and the rash you described, especially its location and resistance to steroids, sounds highly characteristic of dermatitis herpetiformis, which is the skin manifestation of celiac disease. The severe and prolonged reaction you're describing five days after a small exposure is, while extreme, not unheard of for those with a high sensitivity; the systemic inflammatory response can absolutely last for several days or even weeks, explaining why you still don't feel right. Your plan to avoid a formal gluten challenge is completely understandable given the severity of your reactions, and many choose the same path for their well-being. While experiences with GliadinX (they are a sponsor here) are mixed, some people do report a reduction in the severity of their symptoms when taken with accidental gluten, though it is crucial to remember it is not a cure or a license to eat gluten and its effectiveness can vary from person to person. For now, the absolute best advice is to continue being hyper-vigilant about cross-contamination—buffets are notoriously high-risk, even with good intentions. Connecting with a gastroenterologist and a dermatologist who specialize in celiac disease is essential for navigating diagnosis and management moving forward. Wishing you a swift recovery from this last exposure. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      So just to be cautious, there is a big difference between cured, and responding to their medication. I assume you mean that your daughter responded well while taking KAN-101 during the trial, but the drug would not cure celiac disease, but may manage it while you are taking it. Let me know if I got this right.
    • trents
      Welcome to the forum, @Godfather! "Gluten-free" is not the same as zero gluten. The FDA standard for allowing the food industry to us the gluten-free label on a product is that it cannot exceed 20 ppm of gluten. That is safe for most celiacs but not for the subset of celiacs/gltuen sensitive people who are super sensitive. "Gluten-free" wheat starch products have been processed in such a way to remove enough of the protein gluten to comply with the FDA regulation but usually do retain some gluten and we usually get reports from some people on this forum who fall in the more sensitive range that such products cause them to react. Hope this helps. So, you may just have to experiment for yourself.
    • trents
      Welcome to the forum, @Dana0207! Another diagnostic approach would be to get biopsied for dermatitis herpetiformis which would not require an extensive exposure to gluten. But it would need to be done during an active outbreak of the rash. Celiac disease is the only known cause for dermatitis herpetiformis so it would be a definitive diagnosis. It might be tricky, however, to time the dermatology appointment with the gluten exposure and outbreak.
×
×
  • Create New...