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This Is More That Celiac!
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10 posts in this topic

OK..this is an official venting session. I thought I was doing better by avoiding gluten but the truth of the matter is that everything else is bothering me! What is going on? Now it seems that the little bit of milk that was in my coffee(which, BTW I never have anymore but had some of hubby's today at the office!) is giving me the same stomach symptoms! So I guess I can add milk to soy, peanuts, eggs and gluten. I've been having a lot of migraines (almost daily), muscle pain, fatigue, joint pain. These ups and downs are really stressing me out and causing me to have anxiety attacks. My dr. ordered some blood tests that I have to go for to test for nutritional deficiencies. I will do that ASAP. Today I had a bone density test and will have to wait for those results but I already know that the first bone density that I had done 2 years ago showed osteopenia...more fun...so I'm assuming that 2 years later it will probably be worse, especially since the hysterectomy(july 2002). I was not on estrogen because of horrible side effects and not being able to take calcium supplements because of the reactions I had to it...who knows maybe there was gluten in the calcium.....just like the other vitamins that I was not able to tolerate. I am so sick of being sick and tired of trying with no real results! OK........that's it for the venting session. What choice is there? I just wish I felt stronger. I have daily low abdominal pain which I always thought was pelvic from gyn but after going to my new gyn last week....he said that the pain I was pointing to was bowel pain probably due to inflamation! With his exam he concluded that other organs, bladder and remaining gyn area were not responsible for the pain ...as he palpated those and he did not get a pain response! I am so confused and so frustrated! I am tired and weak and just want to feel better! This really stinks............sorry for long sob story.........I'm just exhausted.

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If you just recently started the gluten-free diet, it may take awhile for your intestines to heal. This would mean that you may continue to have symptoms until your intestines are healed. If you've been on the diet for over 6 months then I would get additional tests done to make sure nothing else is going on.

You're not alone though. I've been on the diet for just over 9 months and I am still not better. I am waiting for my colonoscopy results to see if there is anything else going on with my intestines. I get the results on Friday.

Hope you feel better soon! :) I know how hard it is...

-Carrie

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My heart goes out to you!

I have a theory that as the intestines heal the new tissue is more sensitive to certain foods. It may take more time than you had hoped to feel really good.

Hang in there!

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Thanks for the well wishes and the kind words. I guess I have no choice but to give it more time. It's only been about a month and I've had a few mishaps along the way. also, the other food intolerances just flared things up. I'm thinking of doing the York testing for other food intolerances.

I just want my gut to calm down!

Tomorrow is another day so we'll just start again.

Thanks guys ;)

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My theory is that the gluten intolerance "masks" all these other intolerances and once that is gone from yor diet, the others appear more prominant. Again, just a theory...Kate

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I agree that gluten intolerance symptoms mask other intolerances. After I eliminated gluten, I found I was also intolerant to dairy (verified by Enterolab antibody test) and soy (same symptoms as dairy). I suspect that the longer we have had undiagnosed celiac disease (gluten intolerance) the more likely we will develop sensitivities to other proteins (like dairy, soy or the other major allergens). However, I don't believe my 2 additional sensitivities will disappear anytime soon after reading Ron Hoggan's theory in "Dangerous Grains" that gluten, dairy and soy are diabetogenic proteins which influence type one diabetes. On my father's side of my family MANY had and died from diabetes. However, my mom seemed to have the celiac disease symptoms, so I suspect I got the celiac disease gene (also verified by Enterolab tests) from her. Great gene combination! <_<

The GOOD news is after I successfully 'sleuthed' and eliminated ALL sources of gluten/dairy/soy (including my digestive enzyme which contained 'barley malt extract' :o ), I am feeling better and better each day (NO pain, NO bloating, better 'regularity' and much less gas)!! :D Next week I will celebrate 8 months since I began to TRY to be gluten free, 5 months DF, 4 months SF. However, I had many accidental contaminations along the way, including my 3X daily gluten pills (digestive enzymes) :angry: !!

So if you're still experiencing symptoms, keep doing detective work to eliminate whatever bothers you. There are still LOTS of foods to eat, esp. naturally gluten-free fresh meats, fruits and vegies, which are healthier than processed stuff anyway. ;)

BURDEE

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Thanks Brudee,

I seem to be sensitive to a lot of the same things as you. Little by little i will learn what my body likes and doesn't like. At least I finally got to a point where I can see that lot of my GI problems are intolerances. Whereas before I wan't sure what direction I was going in. I was soooooo sick I thought I had to have parasites, viruses, something really bad....and was ready to take anything to kill whatever was living in my system. Now I realize It's not what I take but.....what I don't eat that is going to ultimately help me.

thanks,

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Mela, go with what your heart tells you.

Read Kaufmann's books (Doug). "The fungus link" is the best one to start with.

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I had major digestion difficulties even after the gluten-free diet. I have Celiac, and I just decided that maybe the body doesn't want any grains at all(something some professionals are saying). All the symptoms went away. Potatoes are the only starch I eat. I tried rice again and the symptoms came back about a week later..

Grissomz

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After I started the gluten-free diet i still had problems. I decided to eliminate all grains and that is when i discovered that i had additional allergies to milk and eggs and intolerances to nuts and mushrooms. I tried gluten again to see if maybe it was only an allergy or nothing at all and discovered that there are a few symptoms which only gluten causes and though i don't remember them when they are gone, they are very serious and debilitating when they are present.

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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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