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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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    • I have posted on here before. DQ2, brother with celiac, DGP iGA was the only mildly elevated test. Was gluten-free so did 6 week challenge last winter. Negative biopsy. I am gluten-free now but do go out to eat. Prior to the challenge my health was good. Since then I have: Chest pain, pain between shoulder blades, periods of shortness of breath, heart palpitations, one instance of a heart arrythmia episode, neck is tender to touch on one side (they kept saying sinuses or TMJ which my dentist vetoed) ear ache, bowels never sink. Numbness and tingling. Blood pressure variations. Could be doing chores and feel dizzy and it might be 84/52.  not super low, but not typical for me if I'm running around the house.While other days I am mildly hypertensive. Recently lost 5 lbs in 8 days without trying. Recently electrolytes were low, alkaline phosphatese was low. Ferritin started dropping so started liquid iron 2-3 times per day 4 months ago. Primary watching that, I am not anemic but we are nowhere near iron overload either.  GI doc was a dick. Did not even know DGP replaced older tests and he was very condescending When I begged him for help recently and told me to get a second opinion which is exactly what I plan on doing.  I now have pain in my upper GI area. It is tender to touch. I had my gallbladder out in 97 along with a stone and infection in my bile duct. It hurts in this area. Pancreatic enzymes look fine, liver enzymes fine. Pancreatic ultrasound fine. I will now be doing a EUS Soon to look at bile duct, pancreas and liver.   so a typical day for me is that I might feel fine for a while and then suddenly feel like I'm going to pass out. really dizzy, numbness in odd places, like my body has been hijacked. I will typically eat a bunch of food something high protein and in about an hour or so I start to feel better. However, then my upper stomach starts to hurt in place of the passing out feeling. blood sugars are also normal. After getting the " it must be panic attacks" and condescending looks a million times my primary finally ordered an ultrasound of my sore neck and there is an abnormality in my thyroid which she says looks like possibly Hashti's. Except for one time, all my serum TSH tests were normal. We have more blood work on Monday. As I have not put on any weight and there are other symptoms that are closer to Graves.  Has anyone else had any thyroid issues that followed doing a gluten challenge?  where is your stomach pain? Do you have it above or below your belly button? Mine feels like it's in the pancreas area, like 2-3 inches above the belly button and when I push on it it's tender, but not all the time. sometimes i feel it in my back. 
    • Thanks for sharing with me.  I really appreciate it.  Honestly, after a glutening last summer (still do not know what glutened me), I did not eat out for a year!  The risk was too great as my healing time took 3 months (for symptoms to subside) and six months to regain lost weight.  Our recent vacation to Europe was worth the risk  as we traveled with our entire extended family, but we were extra cautious and ate only at celiac-approved places.  Otherwise, we "dined" at markets or ate the food we brought from home.  Thankfully, we did not get glutened (at least we don't think so!)  
    • I do not struggle with this and I was brought up the same way as you. I don't struggle because for many years off & on we didn't have a bathtub, only showers as well as this being therapy or medicinal for the skin - heck even for the muscles as I age. I figure I've earned my right to luxuriate or medicate with baths any time I've a mind to. My husband saw just how bad my dh got & NEVER begrudges me a nice long soak in the big soaking tub we now have.
    • Hi, No, I do not have celiac  disease. I have an ankylosing spondylitis which is an auto-immune disease provoking an inflammation of the joints. Under the advice and supervision of my doctor and the professor at the hospital I follow a gluten free & casein free diet, which is extremely successful in preventing inflammatory events. And I've been doing so, strictly, for more than 6 years. So I'm not Celiac, but I can tell you that I react strongly every time I take gluten even in small amounts. Even soya sauce, which according to this website has an almost zero dose of gluten, is a lot too much for me. Nevertheless I allow myself to eat food which has been processed in a factory which processes gluten. To conclude, I would say that when you are travelling, especially in a country where celiac disease is scarcely known, you should be twice as careful as when you're going out at home. In the end you can never guarantee that the cook has cleaned his pan after using soya sauce and so on... You can only bet
    • Along those lines, many Americans are now pursuing gluten-free eating. Gluten ... Diagnosis of celiac disease typically requires a history and physical ... View the full article
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