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Ever Changing Symptoms Of Celiac


Carla H

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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??


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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.

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
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    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
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