Tested Once, Doubting The Results

[the57motz]

I would like to post my history here (geez hope you don't mind?) I would love to see what people think here.

I was diagnosed with irritable bowel disease in my teens, pretty much by default because they found nothing else. I had what was called atopic excema for years (god it was HORRIBLE woke me up at night constantly i'd wake up just scratching like a dog) I also had low blood pressure. In a doctor's office my blood pressure after standing up dropped to 60 over 50. I would wake up in the early morning with terrible stomach pain. Also in my teens I loved peanut butter and jelly sandwiches (like most kids LOL) but they made me sick. I always thought it was the peanut butter.(fat) When I got involved with the man who was to become my husband now exhusband- his first words to me the "first morning after" was " do you know that you fart like a dawg in your sleep?"

Celiac Disease runs in my family. My mother absolutely had it, I suspect my grandfather did also. (i posted here last april, I think once or twice) when my mother was a child, the only food they fed here was rotten bananas and jello. she told me once she found some bread, and crammed a bunch in her mouth before her mom could stop her and in minutes was rolling on the floor screaming.

I have gas upper & lower every day (i saw the fart thread good god my male geek coworkers look at me and say "feeling gassy today?" ) the diarrhea is intermittent but sometimes when it hits - I HAVE get to the bathroom fast, my bowels literally turn to water. I have distended stomach, gas diarhea, stomach pain (pain not as often)I also have (sometimes) acid reflux, and just plain hearburn.

When I found out that celiac disease was hereditary, I started thinking about my symptoms and realized the most symptom free i was was when i lived in another state and ate almost NO gluten at all. My weight was great, my energy was high (i walked everywhere) my stomach symptoms were nill. So when I realized this I voluntarily tried the gluten free diet. (after moving from that state where I felt better I had started eating bread etc again) I just couldn't believe how much better I felt. So I went to a doctor, she knew of celiac disease and said it wasn't rare but "uncommon" she was very interested in my family history (it blew my mind when I remembered my grandfather had colitis, and in his later years had a vitamin B deficiency that had to be resolved by shots because pills didn't work. my mom the nurse gave the shots to him)

I took the blood test, everything was negative except 1 of the 5 (i forget I want to say it was eGA but don't trust my memory!) the 1 of the 5 was 99 out of 100. (this was after I'd been pretty much gluten free for weeks) She told me to just "rule out" celiac disease, the only reason she had me do the endoscopy was because of my family history. so she had me wait like a month, eat a normal glutenized diet. I did, and after 2 weeks or so got so sick that I was afraid I wouldn't function at my new job. (i didn't realize brain fuzziness was a symptom just saw that on one of the threads) so i stopped about a week and a half before the test. She said that was ok.

they saw no damage to the intestine, the dude that developed the samples had his own method of doing it they told me, he used something funky like vinegar or ammonia because he got better results.

I'd decided that I was not celiac except especially recently I still notice that EVERY TIME i consume gluten on a regular basis I start to get sick again. Wheat in particular.

any thoughts? (the gas is HORRIBLE, I have sent my german shephard mix dog from the bedroom barking and sneezing like a fool LOL)

are the online blood tests on the up & up? are they admissable to insurance companies?

[the57motz]

the doctor I went to was a gastroenterologist btw....

forgot to mention that. and she also did a full blood work, checked my liver, my thyroid my calcium, fat & cholesterol levels- I was tested as absorbing nutritition normally. But (and believe me I'd be happy if I did not have this disease) I'd spend better than 10 years + eating almost no wheat, no gluten based products.

[Guest CD_Surviver]

I would have the endoscpy redone because they did not find any thing. and the way you discribe everything sound like celiac disease if possible have the endoscopy sckeduled and the a about a week to two weeks start eating gluten but not with every meal just every once in a while until about 2 days before eat alot your intestines heal quilkly so thats why they did not find anything the first time. Did they do biopsy with endoscopy?

Lauren

[the57motz]

yes, they did a biopsy but as I said I'd been better than 10 years plus eating minimal bread, gluten etc and had been symptom free for a long time until I moved back closer to my bread loving family.,

and before the biopsy was done I went gluten free again for at least a week and a half before the endoscopy and biopsy.

I had been thinking about going to a celiac centered clinic of some sort and getting re-tested, also thinking of getting a genetic test done because I am so convinced it runs in the family.

My strongest motivation though is - my beautiful 14 yr old niece who has been told she has a minor/small scoliosis. I am determined to make sure that she doesn't have the disease or if she does she is diagnosed early, and is on the diet so she doesn't go thru what my mom did.

my mom had scoliosis, arthritis and osteoporisis. she had celiac disease for years and ignored the diet. she was so sick towards the end, (and god she adored good bread and pasta) that if she ate a a sub at her favorite pizza place she literally had 20 min to get home before she got sick.

[Guest CD_Surviver]

it runs in my family 3 of us have it as of right now. me my mom and my brother. but my grandma died with lynphoma and i think that my cousin has because she has really bad eczima so i have a feel ing she has but just in the form od dermititis heptiformis.

lauren

[the57motz]

If what I had was dermititis heptiformis, I feel for your cousin lauren- it is just horrible!!! I used to scratch so bad, my skin would blister and bleed. Where is yours cousin's excema? (if that isn't too personal)

[Guest CD_Surviver]

If what I had was dermititis heptiformis,  I feel for your cousin lauren-  it is just horrible!!!  I used to scratch so bad, my skin would blister and bleed.  Where is yours cousin's excema?  (if that isn't too personal)

<{POST_SNAPBACK}>

that is definately dermititis heptiformis. i am pretty sure you have celiac disease. no matter what the doctors say.

Lauren

[CMCM]

Well, the common thread all over this forum seems to be that the MAJORITY of doctors just don't know about celiac disease, not a darn thing. So they take the symptoms and apply them to a disease they DO know about. In this regard, not a lot has changed since 1960-something when my mom was finally diagnosed by a doctor who just happened to know about it. I'm deducing that there are a huge number of possible symptoms, not all the same for any of us. My mom was just telling me that celiac disease is well known and common in Italy in particular, where they routinely test kids before the age of 6. ROUTINELY! I don't know where she read that, but it seems that European doctors know much more about this than we do in the U.S., and that they recognize its prevalence in society. She says she just read that it was 1 in about 130 people who have it. I don't know why there is such resistance to its recognition here in the U.S. celiac disease generally seems "below the radar" of most of the medical community.

Ultimately, you have your own observations and suspicions, as do I. I''m not a hypochondriac and I don't want to have this, but the evidence is mounting and I'm finally having to face it and figure it out definitively. I'm not sure the blood test is a very good indicator at all....as my mom pointed out, the problem occurs in the intestines, after all. So it makes total sense, as claimed by that lab, that stool tests are much more revealing. I think I'm not even going to waste my money on the blood tests.

Ultimately, the diet determines it, I'm beginning to think. If you do the gluten-free diet and you feel better or it all goes away, there's your answer and who cares what the blood test says or doesn't say. My mom is encouraging me to do the lab test battery which does the stool test, the gene test and the additional casein test. Then you KNOW for sure, or so it seems if you can believe what they say on their web site about its accuracy.

The diet sounds pretty quick. My mom, who had celiac disease undiagnosed for YEARS and who nearly died from it (her intestinal villi were so destroyed she wasn't absorbing any nutrients at that point and she truly looked like an anexoric), says she felt "normal" within 2 weeks on the gluten-free. She felt so good she never had any desire to eat wheat items again because she was sick of being sick.

I'm doing the total gluten-free diet beginning today and I'll see what happens. I may eventually do the Enterolab test battery for an official confirmation, but then again, a few weeks on the gluten-free diet may just show me exactly what I need to know. We'll see...

[tarnalberry]

What do you need the additional testing for?

You KNOW that these foods give you a problem - you've run that test on yourself many times. Regardless of what the doctors say, I would encourage you to listen to the things your body is telling you.

[the57motz]

What do you need the additional testing for?

You KNOW that these foods give you a problem - you've run that test on yourself many times.  Regardless of what the doctors say, I would encourage you to listen to the things your body is telling you.

<{POST_SNAPBACK}>

If it were just me, I probably would. But since It's hereditary I've decided to at least get the gene blood test, and maybe try the testing once more time but make sure I'm glutenized clear up to the day of the test. (unlike last time) If I find out that I have the gene, I'm going to have my brother and his ex wife test my niece for the gene also. I'm putting myself thru this because if i have tested proof that I do, I'll have a stronger position to ask for genetic testing for my niece- it's out of concern for her. I don't want her to go thru what my mom did, or even the stomach trouble i've had for so much of my life.

[nettiebeads]

I don't know why there is such resistance to its recognition here in the U.S. celiac disease generally seems "below the radar" of most of the medical community.

Probably because there isn't a prescription or regime other than diet to treat celiac disease. I have the impression that in other countries medicine isn't so isolated as it is here. More holistic; nutrition is recognized as an important factor in health.

Ultimately, the diet determines it, I'm beginning to think. If you do the gluten-free diet and you feel better or it all goes away, there's your answer The diet sounds pretty quick.

Exactly. That's how I was dx'd 9 years ago. Diet only. I have no desire to get any of the "official" tests done, other than genetic, just to satisfy my curiosity and plus I don't have to go on gluten for that. W/i two weeks of starting the gluten-free diet I felt so much better. I don't have any desire for wheat based products because to me they just mean pain, D to the max, overwhelming fatigue and fuzzy fuzzy brain.

I'm doing the total gluten-free diet beginning today and I'll see what happens.

Keep us posted!!

Here's to health!!

Annette

[Guest barbara3675]

Get your further testing done with Enterolab.....it is much more sensitive and then you will REALLy know what is going on. They do a complete panel with gene testing for about $395. You don't have to be eating gluten when you do it either. I had it done and although I don't have celiac diseast or any damage yet, I do have an intolerance and WOW, do I feel better since eating gluten-free. It isn't that hard either. Life is what you make it. I make an error occasionally, but only because I misunderstand the ingredients in something, but then I know it, however in the long run I am much better off. I found this out when I was 59. Barbara PS That is www.enterolab.com

[tofu8grrrl]

Hi-

I decided to write in here becuase it seems related to what you are going through. I just had an endoscopy done on nov. 7th & the doctor took several biopsies and did test for celiac sprue. I got a letter last week that just said that my biopsies were benign. So I called to find out if this also means that I did not test positive for Celiac. The doctor said that the villi looked normal & that the antibody tests all came out normal as well.

The short history of this was that I had watery diarreah and severe cramping for about 8 weeks prior to the test, following a very stressful time (my mother in law who does not speak English stayed with us for 2 months & it was very hard on me). The longer history is that I had stomach problems from about 3rd grade through college and in 2001 was put on a gluten free diet at the suggestion of my doctor in college. My stomach problems went away & stayed away for about 2 years. Then after I graduated, I had a new doctor & I asked her about doing the gluten challenge because I wanted to be tested since the diet was somewhat limiting especially in terms of eating out. I ate gluten for about 6 weeks & had the blood test done. I never saw the actual results, I was just told it was negative, so I"m not even sure if they tested for the right things or not. So, I continued to eat gluten for 9 months when the diarreah started (about 2 months ago). After my colonoscopy & endoscopy, the diarreah continued as before. So after two days of that, I thought to hell with this & I went back on the gluten-free diet experimentally & for the next 3 days, I had only 1 or 2 bowel movements a day (this compared to 8 weeks of 6-12 stools a day if I did not take imodium AD 2x a day & 3-5 stools even when I did take the med). Then after 3 days of gluten-free diet, I had diarreah again for 2 days, but I learned later that I had eaten some salad dressing with soy sauce in it the night before that started, so to me this really confirmed that whether I have Celiac or not, I definitely have some sort of intolerance going on.

However, I'm wondering is it really weird that for 9 months or so, I was able to eat gluten w/o any symptoms? I'm just really confused as to what I have & I feel like doctors are not that interested in helping you find out. My doctor was just telling me that I probably just had severe IBS prior to the tests. I haven't had my follow up visit with her yet--it's scheduled for Dec. 6th. But it does seem like diet is the best test--at least for me. I just don't understand why I was able to eat gluten for so long w/o troubles. Perhaps it is only triggered by intense stress?

My other question is only that I wonder if the prep for the colonoscopy could have skewed the biopsy results from my endoscopy (I had both on the same day) because I didn't have any gluten for 2 days before the tests since for colonoscopy you have to do liquids only for a day & then fast the next day until your appt. (mine was at 2pm). If I had only been having symptoms for several weeks, would the 2 days be enough time for villi to appear normal? I wouldn't think so, but after going on the gluten-free diet, my symptoms practically stopped the same day...so I guess I don't know.

What is the difference between gluten intolerance & Celiac? Is one genetic & one not? I tried reading the article on this site, but I didn't really get it....if anyone has light to shed on that, please let me know. I saw on this site that if you are officially diagonosed, you can claim the extra food expense on your taxes, so that's really my only reason for wanting an official diagnosis. Otherwise I am perfectly happy just eating my gluten-free food & feeling a million x better.

[CMCM]

Speaking for myself, I guess I just have a real desire to know "for sure" about this. Some sort of confirmation. That said, from your own experience, as I've had with mine, eliminating gluten really is the proof--at least, it's proof of something: You feel better without it. You either want to feel good or you don't, it's comes down to that. My curiosity about an "official" diagnoses is also for my 2 kids....obviously, if I have it there is a greater chance they do too.

As for the variety of reactions, it is absolutely very puzzling at times. For years I have minimized my gluten exposure by just avoiding a lot of it....I eat very little bread, etc. And there have been times when I've eaten a small amount and not detected much, if any reaction. And then other times where I have huge reactions and days of feeling bad from it. And when that is going on, dairy products bother me as well.

The medical community hasn't got this totally figured out yet. The blood tests may be helpful, but then again, they may not in some cases. There are tests in other aspects of medicine that are similar in their reliability....so it's not just celiac. Medicine still has a lot to learn about celiac, unfortunately. Luckily, the solution to the problem is diet and not horrible pills and other drugs.

What I'm wondering is if it is worth the money/trouble to get a biopsy--mainly to determine if there has been damage. But perhaps it's enough to just do the diet and see what happens. You can go thru huge expense etc. to "find out", and then the end result is the same: you do the gluten-free diet. You could just as well do this on your own, without a doctor. My experience thus far is that little as I know about it, I know far MORE than any doctor I've yet met. And I'm not inclined to go from doctor to doctor at this point.

If you are really sick, you have built-in motivation to follow the diet. If it's sporadic or not as severe, it's harder to do, as I am finding. I hate how I feel a lot of the time, but I'm still dreading/not wanting to do the diet because there are so many things I love that I would have to give up.

[aikiducky]

One thing that auto-immune reactions are notorious for are how they can change over time. It's not uncommon for a person to react differently to gluten at different times. I don't know why, and I don't know if anyone knows really.

For me personally, feeling really well, REALLY well, for the first time in a long time, has been amazing. And I eat amazing food. I've developed a taste for fruits and veggies, and it's so great to enjoy a meal that doesn't just taste great, but also makes me feel GOOD.

Good luck, both of you, with testing, or not, and the diet!

Pauliina

[tofu8grrrl]

One thing that auto-immune reactions are notorious for are how they can change over time. It's not uncommon for a person to react differently to gluten at different times. I don't know why, and I don't know if anyone knows really.

Good luck, both of you, with testing, or not, and the diet!

Pauliina

Thanks very much! It is good to know that the reactions can change over time--that might explain a lot in my case. The testing is frustrating because it seems like the doctors use it to rule it out when maybe it shouldn't be ruled out so fast if the tests aren't terribly reliable. Oh well, I'm just going to try to stick to the diet anyway & see if I keep feeling better.

[VydorScope]

Mott57..

Please note, if you realy want to redo the testing, simply occasionaly eat gluten before he test is NOT enough, you will get NEGATIVE results reguardless of condtion.

Most ppl would say AT LEAST 2-3 slices of bread EVERYDAY for 2-3 months.

Here some info from elsewhere on this site that will help...

How long must gluten be taken for the serological tests to be meaningful?

Vijay Kumar, M.D., Research Associate Professor at the University of Buffalo and President and Director of IMMCO Diagnostics: There is no simple answer to this question as the susceptibility of the patient to developing celiac disease is dependent upon several factors. One factor is the amount of gluten intake. Another is the genetic makeup of the individual. However, we feel that several weeks of gluten intake, especially in doses of 2 gm gluten/day, should result in positive serology in patients with celiac disease.

Karoly Horvath, M.D., Ph.D., Associate Professor of Pediatrics; Director, Peds GI & Nutrition Laboratory; University of Maryland at Baltimore: The result of serological tests depends on the diet. Generally, three to six months of a gluten-free diet may result in normal antibody levels in a new patient. A strict gluten-free diet for more than three months may result in inconclusive serological tests in patients, who have started a diet without any diagnostic test. In this case a gluten challenge should be introduced for a proper diagnosis.

Each patient has different sensitivity to gluten for reasons that are unclear. The period of gluten challenge and the amount of gluten necessary to provoke serological immune response are individually different.

A 0.3 g/kg body weight/day of single gluten challenge causes immunological changes (cellular immunity) in the intestine (J Pediatr Gastroenterol Nutr 1989; 9:176-180) in patients on a gluten-free diet, however, the serological response is much slower.

Our recommendation is to ingest at least 0.3 g/kg/day of gluten for two months prior to the serological tests. However, if somebody experiences symptoms during the gluten challenge we recommend to perform serological tests earlier.

The protein content of wheat flour is between 7-15% and approximately 90% of the protein content is gluten. That means a slice of bread may have 2-3 g of gluten.

HTH!!

[the57motz]

Well, I've decided to go gluten free irregardless of the test results. the genetic tests came back negative but I'm going to get a copy of them monday (or tuesday) from the doctor's along with my original blood test results to find out exactly what was tested etc.

I've been reading this forum (fanTASTIC info thank you!) and never knew that someone could be iGa deficient and I'll find out if my original test ever testing for total iGA. I'm definitely gonna do the enterolab tests because they sound alot more accurate.

tofu8grrl - if I understood what i've read so far correctly, genetic tests look for certain markers in a specific spot. There are conflicting reports even among geneticists on whether there is an accurate genetic test for celiac disease but the dq2 & dq8 (if i'm wrong PLEASE someone correct me! there's enough false info out there in this disease already) markers are the most commonly found in celiacs. I believe that there is also a DQ1 marker that can be found, and I also read that there is 1 % of celiacs that do actually have no genetic markers at all??? is that correct? because I've also read the opposite if you don't have DQ2 or DQ8 you can't get celiac. Personally I think that last is bogus science but I'd welcome other comments.

All i know is, every friggin' time I eat gluten (especially wheat) I get really sick. various things but I've been eating 2 slices a bread a day (sometimes having to force myself) for 1 month or 2 and now my knees hurt like a muther and are swollen. so that's it folks, i'm off gluten. I'm not going to risk neurological & other kinds of damage.

I'll post my enterolab results, I'm going to send for the test in 2 weeks or so.

[CMCM]

Get your further testing done with Enterolab.....it is much more sensitive and then you will REALLy know what is going on. They do a complete panel with gene testing for about $395. You don't have to be eating gluten when you do it either. I had it done and although I don't have celiac diseast or any damage yet, I do have an intolerance and WOW, do I feel better since eating gluten-free. It isn't that hard either. Life is what you make it. I make an error occasionally, but only because I misunderstand the ingredients in something, but then I know it, however in the long run I am much better off. I found this out when I was 59. Barbara PS That is www.enterolab.com

This is really quite revealing about the nature of GLUTEN....that you could be diagnosed as NOT having celiac, yet you feel better not eating gluten! I'm thinking intolerance could just be the precursor to a full blown and identifiable condition of celiac disease, all you need is some sort of trigger at that point to set it off. After reading Dangerous Grains and several other books on gluten and celiac disease, you just have to conclude that the human digestive system is not meant to process gluten. Some people are obviously more resistant to problems than others, but I personally think the gluten issue is behind the increase in obestiy and diabetes and lots of other health woes of the last 50 years. The rise of all these different things has been huge and coincides with the increase in grain consumption. Like someone said, the evidence is all there, you just have to look at it and put two and two together. One of the books I read (by Dana Korn) had a big letter in it from a doctor who described the pathetically small amount of time spent studying about celiac disease in medical school and she lists all the reasons why doctors don't want to test for it....one reason that stands out is that they are uncomfortable with something they know nothing about, and another is that they are super uncomfortable if a patient comes in with far more knowledge about it than they do...which is sometimes the case with those of us to learn about and research celiac disease. Doctors especially don't like people who self-diagnose (correctly) when the doctor has been unable to come up with the correct diagnosis. In any case, this was very interesting reading.

Carole

[Nancym]

Why is a 50 year old test necessary? Its inaccurate and really doesn't tell you if you have the form of celiac disease that doesn't cause villi damage. It is still damaging to you even if your villi aren't damaged. Some gluten sensitives get terrible neurological damage and never have damaged villi. Dr. Fine believes that villi damage is the end-stage of the disease. Waiting until you get there, you could be terribly sick. That's like waiting to treat cancer after it has matastisized.

To me the gluten-free diet is the ultimate test and you don't need a doctor to take that test. If you really are curious then Enterolab has tests that are a lot more uptodate than the ones your doctor is using and they catch the disease much sooner.

But I think you already know the answer. You are gluten intolerant. Wouldn't hurt to be checked out for other intolerances too though.

I really got a lot out of this essay by Dr. Fine: Open Original Shared Link