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Lpratt43

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Lpratt43 Newbie

Hey everyone! I’ve been on this celiac/food journey for over 2 years now. My mindset has been that I’m not going to be obsessive over going out to eat. Now I will go and order from the gluten-free items and let the staff know that I have celiac. Mostly I will only go where I know people or I will simply eat salad. The other night I went to a local Mexican restaurant. I had corn tortillas and cheese ? a corn taco and rice and beans. The next day at work my left flank started hurting out of nowhere. It progressively got worse and is still hurting 3 days later.

At first I thought it was something wrong with my kidneys and got several tests ran. The only thing that was a little high was a liver enzyme but other than that everything was normal. I swear I’m unable to eat out anymore. I have ‘silent’ celiac and dermatitis herpetiformis. Has anyone else had back/kidney pain with possibly being glutened


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ravenwoodglass Mentor

Yes. It seems those antibodies can cause inflammation and discomfort just about anywhere. I hope this passes for you soon. If your pain gets worse do head back to the doctor.

Ennis-TX Grand Master

I get aches randomly a few days later...normally shoulders, lower back, legs. But this used to my "Normal"...I am a bit numb to pain due to nerve damage, so I only notice a dull deep bruised feeling, and trouble moving said muscles. Unsure if inflamation, magnesium or other vitamin/mineral deficiencies.

BTW eating out is something most of us avoid, 100% gluten free places are your best bet, other places choose stuff that would be hard to gluten....rice and beans, and tortillas are easy to get glutened. Beans can have CC, Mexican rice if in a hurry they will add flour to thicken it faster, and tortillas...can either be skillet/tortilla skillet heated or used one of those warmers. If they heated it up on a skillet or griddle...they probably use the same one for flour as corn. (if it was a bit hard dry, or browned this was the case, soft, moist and hot the used a warmer and a microwave. Call it paranoid but I grew up in a Mexican family.

cyclinglady Grand Master

I am not sure your current issues are celiac related.  I do not have DH, but I would assume that your DH rash would emerge indicating that you have been exposed to gluten.  Our fellow members who suffer with DH are comparable to “carnaries in a mine shaft”.  They actually can “see” the results of a gluten reaction.  I also realize that DH has the ability to seemingly flare at will and it is speculated that can take months or years for antibodies to exit the skin once deposited.  (I wish more studies could be done on celiacs who are recovering and please forgive me as I do not have DH and am not very knowledgeable about this subject).  

During the past two years have you had DH outbreaks?  If you have celiac disease and it manifests as DH, I would not say you are a silent celiac.  Maybe I am not understanding your post.  

In any case, I agree with the other posters that celiac disease can impact your kidneys.  It is known to be systemic.  Whether or not you are in an active celiac flare is unknown. Perhaps your doctor can re-run a celiac blood panel to help determine if you are dietary compliant if your rash is not active.  

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    • Aretaeus Cappadocia
      I'm not saying this is what you have, but your description reminds me of Morgellons, which are not very well understood. Here is a review from a reputable source. If it seems similar to your experience, you could raise this question with your Dr.  https://my.clevelandclinic.org/health/diseases/morgellons-disease
    • nancydrewandtheceliacclue
      Hi Trent, no dairy. Other than good quality butter. I have been lactose free for years. No corn, sugar, even seasonings and spices. I don't eat out. I cook my own food.
    • trents
      @nancydrewandtheceliacclue, are you consuming dairy? Not sure if dairy is part of the carnivore diet.
    • nancydrewandtheceliacclue
      Hello Russ! Thank you so much for your reply.  I have not had an antibody test done, ever, relating to gluten. Last year I had an allergy test done via blood draw (as my insurance wouldn't cover the skin test) but this was for pollen and grasses, not food. Even on the blood test I had extremely high levels of reactions to each allergen. Could this seasonal allergy inflammation be contributing to my celiac inflammation? I am so careful, there is no way I could ingest gluten. For example, couple of months ago I tried a cough drop that says it was gluten free. I checked ingredients, it seemed fine. But just taking one of those caused me to have nausea, vomiting, and the same extreme abdominal pain. Have you ever heard of anyone else having symptoms like mine after being diagnosed celiac and strictly gluten free? The last episode I had like this was yesterday, after I ate a certified gluten-free coconut macaroon with a little chocolate on it. I have eaten coconut and chocolate before with no issue,  so I didn't see how I could all of a sudden have such a strong response. 
    • Russ H
      The sensitivity of people with coeliac disease varies greatly between individuals. The generally accepted as safe limit for most people is 10 milligrams per day. This equates to a piece of bread the size of a small pea. Some people report that they are more sensitive than this, but others can very occasionally eat a normal gluten containing meal without reacting. I don't think that touching or throwing bread around would lead to you ingesting enough to cause a reaction. There are case reports of farmers with coeliac disease reacting to the dust from gluten-containing animal feed but they were inhaling large amounts of dust over a long period of time in barns. Perhaps you episodes are caused by a reaction to something other than gluten? Have you had your antibody levels checked to see whether you are still being exposed to gluten?
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