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Question For The Experienced Here...
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9 posts in this topic

Is it common for symptoms that are related to different organ systems (ie GI, bladder, skin,brain) to come and go in seemingly no related pattern? In other words do most people always get reproducible symptoms or is there a subset of people who are gluten intolerant that have NO consistent symptoms?

What I have found is that my symptoms have slowly escalated over my life (now 46) but while one set of symptoms improve intermittently (GI) others worsen (skin and bladder). It becomes very confusing to decipher what the heck is going on... but I am convinced that they are all related. The chance that I have 3 or 4 separate issues that NO doctor can figure out vs one thing that is responsible for all of them seems to favor the one over lying cause IMO. It seems to make sense that an overactive immune system is searching for a variety of targets to attack and then (at least in my case) backs off for a bit... until it starts again. I just hope that by cleaning up my diet I can get to the root cause of the issue!

Any thoughts?

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Yes.

That's the short answer because I'm on my cell.

I will add more later and I'm sure you will hear from a few more before then.

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Yes.

That's the short answer (not because I am on my cell :)but because this is the answer to your major questions about symptoms)

But you raise several questions and there is no "pat answer."

Are you asking if these symptoms resolve on a gluten-free diet?

Yes, they can. And yes, our bodies are ONE complex system, so of course, I think they are related

But what else is going on? Are you a celiac? You do not say.

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Since your doctors seem unable to make any connection, put it all together for them. Tell them you want to be tested for celiac disease. Make sure they run a complete panel because all the tests are important and you may test positive on only one of them:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

Keep gluten in your diet until all testing for celiac is done, because the next step (perhaps even if the blood tests turn up negative) is to do an endoscopy with biopsies.

If you get this far and still have no diagnosis, that's the time to give up gluten and see if it makes a difference in your life. And you need to trial it for 3-6 months before making up your mind because it can take that long to appreciably improve.

Print out that list and take it to your doctor. Best wishes for coming up with an accurate diagnosis. Keep us informed of how things go. :)

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Excellent question four leaf.

Yes. Other organs can be affected when Celiac an auto-immune disease is present and untreated. Some of the most common connections to Celiac....

Diabetes

High abnormal liver enzymes (usually resolves once gluten free)

auto-immune thyroid disease, Grave's and Hashimoto's

some things associated with damage to the gut...

leaky gut syndrome

pernicious anemia (gut lining lacks the intrinsic factor to process vitamin B12)

severe constipation can lead to UTI's (urinry tract infection) to kidney infection

vitamin and mineral defiencies

anemia (PICA might be termed under mental illnes or at least it probably was in the old days. In cases of anemia the craving to eat/chew NON food items)

keratosis folliculitus, skin irritation from fat malabsorbtion

geographic tongue (still not proven which defiency)

some acne breakouts (zinc)

premature greying may be related to vitamin B12

So these are a few examples.

There are also many auto-immune illnesses that seem to be helped by a gluten free diet. (like M.S.)

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Thanks for your replies... I have had some blood tests for celiac (not sure which ones) and they were negative. Had an endoscopy that was negative for celiac (biopsy was done). I have a life long history of GI issues, am being treated for IC and have had swollen painful parotid glands intermittently (blood work for Sjogren's was negative). No specific answers (I did have`a biopsy significant for ulcerative colitis). I strongly feel that I have some low level auto immune issue that is responsible for my health problems. Perhaps gluten is an issue so I have committed to try no gluten and see how I feel.

I can eat gluten and not really reliably suffer any ill effects but I wonder if my immune system feels otherwise. That is why I wondered if people here always get symtoms when they eat gluten... of course I do realize`that everyone is different. Frustrating...

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I think there is enough reputable research out there that a gluten free diet is helpful for Crohn's Disease for you to try the diet. (I do realize you mentioned ulcerative colitus, not Crohn's.)

You have to remember that if gluten is an issue for you, you have probably consumed in part of every meal. (Especially if you have followed doctors orders to eat "healthy" and even commit to eating MORE wheat in whole grain form. You should not have been advised that for ulcerative colitus.) You haven't given your immune system a chance to stop attacking your body.

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Hi Fourleaf,

Some people with celiac have no symptoms and they call that silent celiac. Others have very severe symptoms, and some have nuerological symptoms or skin rashes, or joint pain or dry eyes, or itchy skin or nail ridges or sneezey cats. There are 300 possible symptoms of celiac disease, including the silent no symptoms people. So trying to figure out how your body should react by comparing to how others react is a little dicey. Sneezey cats isn't one of the celiac symptoms :). There's also NCGI which they are still trying to figure out. The thing to understand is not everyone reacts the same, and not everyone has GI symptoms. A positive response to the gluten-free diet is a very good indicator that a person shuold not be eating gltuen though. Better than any test a doctor can give you. That doesn't mena don't get tested. Getting tested is important, but trying the gluten-free diet for several months is best test after all the medical doctor testing is done.

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    • Hi everyone, I've been reading this forum sporadically and have some questions of my own. I'm in my 40s and was diagnosed with celiac last December by biopsy and blood work after months of tests by my primary and then a gastro. My husband, around the same age as me, was dx'd with stage 4 cancer a month later, so admittedly it's took me longer than I'd have liked to learn about celiac. Now I feel pretty on top of my diet. I mostly make my own food - proteins and veggies, with some certified gluten-free snacks in the mix - and am pretty strict about what I will/won't eat at friend's houses or in restaurants (I prefer to go to dedicated gluten-free kitchens whenever possible). I'm doing okay on the diet, but still getting glutened every so often, usually when I let me guard down outside the home. I also periodically see my primary and a naturopath (who happens to have celiac!), but still, I have many questions if anyone would care to answer:

      -FATIGUE. I'm still so tired, fatigued so much of the time. My doctors blame this on the stress of my husband's diagnosis and my periodic trouble sleeping. But even during weeks where I'm sleeping enough (8-10 hrs a day), eating right, exercising as I can, trying to keep stress at bay, I'm still so bleeping tired. Maybe not when I wake up, but by late afternoon. Often my legs even feel weak/wooden. Has anyone else experienced greater fatigue early on after being diagnosed? This will pass, yes? I know I could cut out the sweets and that could help, but also, being a caregiver is hard and sometimes it's nice to eat your feelings between therapy sessions.  

      -SYMPTOMS CAUSED BY FATIGUE? Sometimes I'll have other "feels like I've been glutened" symptoms if I haven't gotten enough sleep, though I'm trying so hard to sleep at least 8 hours a night these days. Hasn't happened in a while thankfully, but there was a point this summer where my insomnia was bad and my arms were achy and I had some crazy flank/back pain I'd never experienced before. For weeks. Doctor ordered me to sleep sleep sleep, taking Benedryl if needed. I did, and the symptoms went away, but weird, yes? Has this happened to you? I ask because I want to make sure I'm getting all strange pains tested to the full extent if there's a chance it's something other than celiac. I do sometimes still feel that strange side stitch after a CC incident.

      -SKIN PROBLEMS. I have had a smidge of eczema since I was a teen and it - and the dermatitis herpetiformis I've acquired with my dx - are out of control right now. I recognize the connection with stress, but also, has anyone found any great natural remedies for DH to stop the itching? I've tried so many useless ointments and medicated creams, a number of them given to my by a dermo months ago. I see my naturopath this week, but thought I'd ask here too.

      -MOSTLY gluten-free KITCHEN GOOD ENOUGH? My husband is supportive of my diet and mostly eats gluten free meals with me, but we still keep a gluten-y toaster for him and the gluten-y dog food in a corner of the kitchen and he still makes the occasional meal with gluten for himself on his own cookware (ravioli, pizza, mac n cheese, etc). Or sometimes I make eggs/toast and the like for him when he's too sick to move. Otherwise, we're militant about how we cook, which cookware we use, etc. He even has a kitchen nook off our den where he makes sandwiches. But sometimes I wonder if having two separate sponges in our shared-ish main kitchen is enough and I should just banish all gluten whatsoever from the kitchen. I can't be the only one with a mixed kitchen, right? How do you do it if you have a mixed-eating family?

      Thank you so much!  
    • Hang in there!  Count your blessings.  Do something you like to do and relax. I know that is hard to do as a young mother (as I sit here in the kitchen sipping coffee quietly as my teenager is sleeping in after a late football game last night where she marched in 90 degree plus weather in full uniform).   But seriously, take a few minutes to relax!  
    • Meredith, this is very true. A colonoscopy is for diagnosis of the lower intestine, endoscopy for the upper intestine.  How did your doctor interpret the tests? I suggest you read the link Cycling Lady gave you because it contains a lot of good information. 
    • Sorry, but this product (supplement) is not even certified gluten free.   Seems odd that a product geared to Non-Celiac Gluten Intolerance would not take the extra step of getting certified.   I guess I am a Nervous Nellie, especially after the reports that several probiotics were contaminated with gluten.   https://celiac.org/blog/2015/06/probiotics-your-friend-or-foe/
    • Thank you for posting that. I've had a lot of that bloodwork done and everything is normal. At the peak of this belly bug I had blood work done and my white count was fine. I think it's just my health anxiety scaring me into thinking this is something scarier (to me) than celiac. Maybe the anxiety will subside once I go gluten-free. The anxiety is brutal.
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