Wierd Symptoms - Celiac?

[swimmer]

After many years of ill health, I'm currently waiting to see my doctor to ask for a test for celiac.

I had trouble with my BMs even when I was at school. It started with chronic constipation (BMs only once or twice a month), despite being a very fit active person, terrible hayfever and other allergies and pasty pale skin with dark circles under my eyes. In fact, people often used to ask if I felt ill because of how I looked, and it was easier to say yes even though I felt normal. Oh, I also got terrible bouts of wind (gas) throughout childhood.

At around 16/17 these problems started to get worse. Suddenly, the gas was more constant and uncontrollable, I started to get urgency with my BMs and I was suffering from recurring styes on my sore itchy eyes. My hair became very thin on the top of my head. (Has never grown back fully).

This gradually progressed to become alternating C&D, stomach cramps, fatigue and sleep disturbances (narcopleptic? hallucinations and OBEs). I even had a seizure about a year ago in my sleep after a really bad day of gut cramps.

I've experimented with my diet A LOT and the only time I really felt significantly better was when I went gluten-free (and dairy free) for about 6 weeks (total cure). Interestingly, dairy seems to bother me too, but not as much as the wheat.

I have Irish grandparents, my dad suffered from D a lot and my grandmother had bowel cancer (I think).

My doctor did do a series of blood tests a couple of years ago, including celiac, but they were all negative, although at that time I had drastically reduced my intake of wheat (no bread or pasta), although I can't say I was completely gluten free. I have also had dried, cracked lips and sore eyes going right back through my childhood.

Does this sound like celiac. What if my doctor agrees to another blood-test and it is negative also???? Help!!!!!

[Guest aramgard]

If you now are gluten free, you probably will register negative on blood tests for Celiac. You sound like I did, except at age 15/16 I developed dermatitis, which was also misdiagnosed as exzema. I didn't develop the gastric problems until I was in my 30's and then it was sporadic until I was in my 60's when I had diarrhea for 6 weeks, lost 40 lbs and couldn't walk a straight line. After watching TV with Danna Korn and her son, I requested blood testing for Celiac and registered positive, then the biopsy confirmed. If you feel good while gluten free, that is the ultimate test of being a Celiac as far as I am concerned. But, if you are interested in really finding out for sure, why don't you try the genetic testing. If you have the symptoms and you test positive for the gene, you are a Celiac. Good luck. I was just diagnosed 3 years ago--no thanks to the medical profession. Because it was my idea to be tested, the doctor thought I was crazy. He did apologize, though, after he read all the tests. But his comment was "Gee, I never had a Celiac patient before". Sound familiar? anyone. Shirley

[seeking-wholeness]

swlmmer,

Your symptoms most certainly could be caused by celiac disease, and unfortunately, your being gluten-free when you were tested may have skewed the results. If you are eating gluten again now, you might want to have the tests repeated, but to be honest, they are no where near as reliable as doctors would like you to believe. A biopsy, too, may miss celiac disease-related damage if it is only patchy. I always suggest checking out the website for Open Original Shared Link, because the stool testing they perform is reported to be more sensitive than blood work. They have a gene test as well, and they can also test for sensitivities to dairy and yeast (which could be very useful to you).

It is fairly common for people with celiac disease to have trouble with dairy, either as a result of lactose intolerance caused by damaged villi or because casein, a milk protein, looks similar enough to gluten to cause a cross-reaction in their bodies.

I hope this information is helpful to you, and welcome to the board!

[swimmer]

Actually, I'm from the UK and celiac was one of the first things my doctor mentioned (especially as I have Irish grandparents). The rate of celiac can be as high as 1/80 in some parts of Ireland. It's just a shame I was eating a low gluten but not gluten-free diet already when I was first tested.

Every time I see him now to say still no better he queries celiac again and then looks at my negative tests. Since my last visit I did a gluten-free diet for 6 weeks (total relief and cure from symptoms - felt better than I EVER have before). Now I'm back eating gluten again and I'm getting sicker and sicker.

I'm worried about struggling now to get more tests and a definite diagnosis, especially given those earlier tests and the fact that there can be false negative results. I know I feel better without gluten, but really need to know how strict I need to be on the gluten-free diet - is is celiac or not - to avoid intestinal damage.

My symptoms have also been slowly progressing in severity over a long period of years (I'm now 30) and I'm worried that evidence of celiac (via biopsy) may not have fully developed yet (will be ruled out by negative tests) and then I go on to develop it.

Worry, worry, worry!!!

Thanks for responding.

[swimmer]

Sadly, don't think I can do the Enterolab tests as I'm from the UK. There doesn't seem to be any similar test over here.

[gf4life]

Hi Swimmer,

You need to have your doctor do another set of bloodwork on you. Also have them do a total serum IgA to make sure that you are not IgA deficient , which would make you show a false negative. You sound very much like you do have celiac disease, and one negative test years ago, does not mean you don't have celiac disease. You may not have been producing enough antibodies to show up yet, especially if you were on a reduced gluten diet at the time. I believe this is what happened to me. I am 31 and have been sick all my life. I tested negative while on a reduced gluten diet, and then got tested through EnteroLab when no one would repeat the blood tests or do a biopsy. I tested positive on the stool and gene tests this past November and only (finally!) had the biopsy done two days ago. I know I have celiac disease, but my doctor won't believe me, either! Please don't stop pestering your doctor about running the tests again. Make sure you are eating a lot of gluten, too, especially if they want to go ahead with a biopsy. I know how much you are suffering, but you have to make a choice. Either go on the diet, or go after further testing. For me I know I would not have stuck to the diet forever without a concrete diagnosis. I'm sorry you don't have the equivalent of Enterolabs in the UK. Please ask your doctor for the tests again.

God bless,

Mariann

[tarnalberry]

I'd say heck with worrying about intestinal damage - you know that when you have gluten, you FEEL worse. And even if you interpret that as if you have a little bit of gluten you feel a little bit worse, there's no reason to make yourself feel a little bit worse, so just stay totaly gluten-free.

Then again, I'm considering whether or not I should biopsy... But my dietary tests have been pretty obvious for me...

[seeking-wholeness]

swimmer,

I think your worry about the biopsy is well-founded. Also, even if slight damage is clearly evident, some pathologists refuse to label it celiac disease because the villi are not totally flattened. Personally, I think this approach is about a idiotic as refusing to consider a woman pregnant until she reaches her due date!

Regarding the blood tests, did your doctor check your TOTAL serum IgA levels or just the anti-gliadin IgA levels? The total level serves as a control (proving that you are not IgA-deficient) without which a negative anti-gliadin test result is meaningless. If you happen to have IgA deficiency, of course your test results will LOOK normal, even if they are sky-high for YOU! Also, if you were tested for anti-tTG antibodies, many labs use tTG from pigs--but I have read that the test is not accurate unless human tTG is used!

Gluten intolerance affects more than just your digestive system! Even if your intestines are not being actively damaged at the moment (although it sounds like they probably are), your immune system is definitely deranged (allergies, dark circles), your brain function seems to be out of whack (hallucinations, seizure), and who knows how else gluten is managing to wreak havoc on your body? I think that going strictly gluten-free is the only real answer. While you may improve somewhat on a low-gluten diet, your troubles will not totally vanish unless you are completely gluten-free. (Trust me; I spent a year wheat-free before I even suspected celiac disease, and I got better slowly but still often felt borderline suicidal for absolutely no reason. Now that I am gluten-free, the depression only hits me when I've had a gluten "accident"!) It can be difficult to adapt to the gluten-free lifestyle, but the rewards are definitely worth it!

I wish you luck as you seek some answers!

[ksccurrin]

My daughter was lucky enough to be referred to a gastroenterologist for recurrent abdominal pain, failure to grow, fatigue & other symptoms. He did know which tests to order for celiac & when they were positive followed w/ a biopsy which was also positive-in july 2003. As we eat together, I went on the gluten free diet as well in July. I finally got my MD to order the tests as a primary relative but they were negative; I suspect because I had been gluten free for about 2 mo when they were drawn. However, I have been unexplainedly diabetic since gallbladder surg several years ago and i have been seen for liver problems they never could give a name to. The more I read about celiac disease the more certain I am that I have it. I'm not planning on loading myself w/ gluten just to please my MD w/ a positive test! He does know my HgbA1C is now in target range for the first time ever since the onset of the diabetes; that tells me something right there! At the rate my daughter & I are recovering, I would hesitate to fire up the immune response just for the sake of a positive test result. I found the study (Celiac.com-new research) showing rates of recovery interesting- looked like an average of 80% after 2 years gluten free. This helped me to know that every exacerbation of symptoms might not be related to slips or hidden gluten but just to the complexity of trying to heal the organs that have been damaged when the gut is not able to absorb the nutrients needed until it heals more itself. This is a slow process; and discouraging at times. We do feel enough better already to keep going with recovery the best we can each day! Glad to find other people facing the same things-

[Guest jhmom]

Welcome ksccurrin:

I am sure since you were already gluten-free for 2 months that is why your test were negative. I do not blame you for not wanting to gluten load to please the doctors. Luckily I was still on gluten when I went though all my test but they all came back negative. I eventually was tested through Open Original Shared Link by stool panel test and the results were positive. I immediately started a gluten-free diet and began to feel better, to me that was the real test.

I hope you and your daughter continue to feel better

[VAGuy]

You mentiond styes and thinning hair - soaps and alkaline H2O drive my skin crazy - I've had similar problems - no reason why celiac disease can't affect skin - I gave up shampoos 8-9 mo. ago (keep hair short, minimal water exposure, buff with dry towel -looks ok, feels ok). Hair more dense, bald spot shrank a little, skin improving. Since gluten-free 2 mo. ago skin really improving.

Your title is swimmer - I used to work on Hot Tubs and Spas - I used to think skin problems caused by over exposure to the chemicals - now I think celiac disease sets the stage and soaps, chlorine, alkalinity are big problems. Be careful of ointments and creams (vehicle/base). Along with forever avoiding gluten, I have no intention of ever going near a Hot Tub or swimming pool again.

As for diagnosis - I did a posting asking costs of Endoscopic exam - heard $1400 to $2500 - full workup from Enteron is like $349/$450 w/ 1/2 hour phone consultation, a gene test is $149, more options availible, check out their site at www.enterolab.com . The difference is vacation money for you if you have it - visit the states, do the test, get the results forwarded, have some money left. Might sound goofy but think about it.

I for the most part think physicians are a good bunch - but I also do not think they care if you are homeless as long as they get their fee.

[alexa11219]

Hi, I'd like to share my experience with you, maybe it'll be useful to someone. I'm 54. Had severe stomach pains since my birth. About 35 years ago was diagnosed with gastritis and colitis. Didn't have much help from dieting. Depression, fatigue, sleep disturbance, severe headaches, joint pain, food and medication allergies, asthma - everything like from the text book. About three years ago developed severe diarrhea, sometimes up to over 20 times a day, and gas. Suspected, it was caused by some allergens. Went to a Dr. and had some blood work done for allergies which was positive for farina and negative for gluten (how is it possible?). My allergologist openly admitted he never heard that allergy could cause diarrhea. The symptoms persisted. Half a year ago, reviewed my test results and realized what the problem was. Went to my physician and GI and declared I had celiac disease, had a gastroscopy and colonoscopy with biopsy done. Result: erosive esophagitis, erosive gastritis, multiple ulcers in the antrum, duodenitis, lymphoid hyperplasia in ileum, colitis with edematous, erythematous and with petechial hemorrhages. Negative for celiac disease. All the demage in my intestinal tract was explained as caused by gluten intolerance which is kind of the begining of celiac disease but not it yet.

Maybe that's what's going on with you? You don't have celiac disease but definitely own gluten intolerance? Would appreciate any comment on my story.

Alexa11219@aol

[VAGuy]

Alexa - you said that an allergists test for gluten came back negative; and that after the scope exams a biopsy did not show celiac disease, but you were told the damage was by gluten intolerance. Can you describe how the Dr. reached that conclusion.

Yours is one of the scariest postings I've read; I'm trying to figure out how I should proceed.

[Guest aramgard]

Alexa, I agree. If you are gluten intolerant, you are a Celiac. Most American doctors do not seem to comprehend this little fact. We get so many wierd reactions from doctors and very strange ideas about what Celiac is that it is totally amazing we are all halfway sane. Read-read-read about Celiac. Try the Mayo Clinic-s website. There are several really good websites about Celiac. Even the GIG (gluten intolerance group), or CSA (Celiac society of America) can give you some really good info. These websites will give you a better perspective of what the disease is and how to treat it. Then try a gluten free diet for several months and see if you don't feel better. I'll just be you will. Shirley

[gf4life]

I just want to get everyones opinion here. My opinion is that if you have any level of gluten intolerance then you have Celiac Disease. It is like saying that a pregnancy is not called a pregnancy until the ninth month! Isn't it still a pregnancy for the first 8 months! Celiac Disease has many stages, but most doctors will not call it celiac disease until the damage is severe. To me this is wrong! Even in the early stages it should still be called celiac disease. But whatever you decide to call it (Celiac Disease, Gluten Sensitivity, Gluten Intolerance, Celiac Sprue, Non-Tropical Sprue...and the list goes on) the treatment is still the same. Total lifelong adherence to the Gluten Free Diet.

Just my opinion. (Can you tell I am frustrated here?)

Mariann

[seeking-wholeness]

Mariann, I totally agree with you!

[YankeeDB]

Regarding that negative gluten allergy test--sometimes tests are done incorrectly or interpreted incorrectly. Sometimes we think of them as gospel but errors can be common. Just my $.02.

[Nin]

I agree about the definition of being a celiac.

I did the enterolab testing, so medically I am classed as "gluten sensitive".

I consider myself a celiac. Not full blown that goodness, but that is the only difference. I think the problem arises from the traditional medical practice where they say the gold standard is the biospy proof. There was a good article in the Celiac newsletter that said do we wait for a heart attack to say you have heart disease, no of course not. Same thing should be done with celiac. Perhaps in time they will change how they communicate about this problem and make it easier for all to understand.

[alexa11219]

VAGuy, you are asking me how my doctor came to that conclusion. Very simple, empirically, the way my allergologist did it - if he doesn't know that allergy can cause diarrhea, it means it can't cause it. If my biopsy showed the villi were intact (I'm not sure they were), it means for them there's no celiac disease. If there's no celiac disease but I'm much better being gluten-free, it means I have gluten intolerance. None of specific blood tests for celiac disease or stool tests were done. Tell you even more, when they perform biopsy, they knew I was gluten-free for MONTHS. I didn't know it changes the result, doctors are supposed to know those things, but I'm sure they did not. I asked them what caused all those ulcers. The answer was, "Since no virus or bacteria was not found, it means it's caused by gluten."

Now, I'm between insurances. I can't use my previous one, and the next one will be avalable not earlier than in 3 months. I can't consult a different Dr. or do other tests. I feel much, much better being gluten-free, but still have some simptoms (bloating, gas, sometimes gastric and intestinal pain, not often though, joint pain, thinning hair). Allergy runs in my family. In addition to gluten, I have allergy to eggs, shell fish, lamb, some antibiotics and other medications, other stuff. Maybe it would be wise to spend that money (about $450) for Enterolab and get tested not only for gluten (but now I'm gluten free for about a year, will the result be correct? isn't it too late?) but in addition for yeast and lactose?

I am totally confused, absolutely upset and devastated, and scared. I don't know who I can trust. Can it wait several months? Anyone, answer me please. You may contact me directly at alexa11219@aol since they misplace the posted information and sometimes it's difficult to find the necessary posting or section. Thank you.

Alexa

[gf4life]

Alexa,

If you want to know sooner what is wrong, you could still do the Enterolab tests. The complete panel of tests includes the Gluten sensitivity stool test, tissue transglutaminase stool test, intestinal malabsorption test, gluten sensitivity gene test, and for a limited time, free milk sensitivity stool test for $349. Even though you have been gluten free for a year, it can tell you if you are still getting some gluten accidentally. Or you could just order some of the individual tests for food intolerances and the gene test.

I know it can be frustrating to have to wait and still not be sure that you will get the answers to your health questions. I've fought the system for far too long myself, and I am getting very tired of it. I am almost done with all the testing for myself, and am part way through the testing for my kids. I am so tired of all the doctors and most that I have met have not clue about celiac disease. When my GI finally agreed to do a biopsy, even though she didn't think I have Celiac Disease, she knew I had started a gluten free diet. She did not tell me I needed to go back on gluten, but I knew, so I scheduled my test for two months down the road and loaded my body up with far too much gluten everyday for two months. I'm still not sure it was enough. I get my results back on Friday and after 3 weeks gluten free (except for a few accidents) I still don't feel good. I had been gluten free twice before and felt better within a few days. I really feel like I did a lot more damage to myself during my gluten challenge than was there before. I do not recommend for you to go back on gluten for testing.

Open Original Shared Link is probably your best bet.

God bless,

Mariann

[alexa11219]

Thank you Mariann for your support and advice. $349 is a lot, but I believe will serve me well. I'll do it. Thanks again.

Alexa

[alexa11219]

Hi everyone. Today, I re-read once again your responses for which I'm very grateful. I oredered Gluten Sensitivity Stool and Gene Panel Complete plus Milk Sensitivity Stool Test from Enterolab. Hopefully, it'll clear up at least what exactly I'm sensitive and what's causing the symptoms I's still having though I believe I'm gluten-free. Unfortunately, they charge additional $19.95 for shipping, so total is $368.95 . Well, what the heck, it's worth it in any case.

Everyone have a nice holiday ,

Alexa