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Ready To Throw In The Towel!


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8 replies to this topic

#1 SaucygirlR

 
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Posted 24 February 2005 - 01:24 PM

I am very, very confused and frustrated. I was diagnosed with celiac disease by my family doctor about a year ago; I didn't see my test results, but assumed that's what I had because I went to her with IBS symptoms and she took blood tests and said it came back positive. I also had an upper and lower GI which showed nothing wrong. Went gluten free for several months but was also on prednisone to help with the "inflammation" in my stomach. Felt okay, but not great. I gained about 40 pounds (probably from the prednisone), and since I'm already about 100 pounds overweight, this did not help much. Fell off the wagon last summer and didn't do very well not eating gluten and didn't feel any better, any worse, just kind of status quo. Symptoms prior to diagnosis were a lot of gas, bloating, and diarrhea in the mornings with alternating constipation from time to time and sometimes nausea. Well, I decided about five months ago to get on the bandwagon and go totally gluten free because I was concerned about my health, infertility, etc. While eating gluten, I lost about 25 pounds, which, for me, is not a bad thing since I am so overweight. Since I have stopped eating gluten, everything is much, much worse. Instead of having diarrhea in the morning and stomach pain at night, I now have diarrhea all the time, it's totally unpredictable (before, if I was able to get it "all out of my system" in the morning, I'd generally be fine the rest of the day. Now, it "hits" with no warning, instead of having 3-4 bms a day I'm having between 8-10, I am in constant pain (my stomach feels very "irritated", for lackof a better word, it hurts constantly, I have constant pain in the upper part of my abdomen that wraps around to my back, lower back pain, feel constantly hungry, have been vomiting "randomly" at times) and I am getting so that I am afraid to leave the house because my diarrhea, which was once "limited" to the morning, now has no rhyme or reason. I was also diagnosed with GERD and since going gluten free I have GERD related chest pains that are so severe and scary that I alone have probably put the ER doctor's children through college and grad school! I feel terrible and my symptoms are a thousand times worse! Things that used to not upset my stomach, like salads, are now totally out of the question because they pass through me totally undigested and give me horrible, horrible diarrhea (more horrible than normal), and I feel like my quality of life is nonexistent. I thought that going gluten free was supposed to make a celiac feel better??? I can eat nothing but a rice cake and rice with a chicken breast and asparagus and have a stomach that is much, much, worse than if I ate lasagna with garlic bread! I'm getting to the point that I don't even want to bother with this gluten free stuff any longer because it's expensive, it's exhausting, it's limiting and frustrating, and I'm feeling worse.

So, after all of that venting, I guess :D , here's my question:

I got my test results from my doctor. They show Antiendomysial < 1.5 (the lab work says "<1.5 Negative, no significant level detectable), Gliadin IGG 67, high, reference is less than 20, IGA 11, normal, reference is less than 20. My question is, do I have this disease or what? I've done a great deal of research and have read that the antiendomysial test is much more accurate than the antibody tests and that the IGA is a sign of celiac, not the IGG. I've thought about doing a gluten challenge and getting retested, but the only gastroenterologist is 80 miles away (read: road trip, bad for someone with chronic diarrhea issues) and I've already spent thousands of dollars on medical bills in the last year and am not sure I want to pay more. Any thoughts would be greatly appreciated! I have thought that maybe I was just trying to "cop out" of having celiace disease because I don't really want to have it, but I've learned that eating gluten free isn't so hard or terrible these last few months, and don't mind doing it IF this is what I really have and IF my health got better instead of worse.

I would really appreciate any help or guidance. I eat a pretty bland diet nowadays because I'm hoping my stomach will feel better, but it's just gone from bad to worse and now I'm thoroughly confused about my test results. I consider you guys the "experts" moreso than my doctor ninety percent of the time, so I would love to hear what anyone has to say!

Thanks!

Rachel
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#2 celiac3270

 
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Posted 24 February 2005 - 02:02 PM

Try the Specific Carbohydrate Diet (SCD)....strack2004 is a great source of information. Try pming her for information on this if she doesn't read this post--
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#3 SaucygirlR

 
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Posted 24 February 2005 - 02:34 PM

Is that a diet for celiac disease or for weight loss? I'm sorry, I'm a bit confused but God knows I need some weight loss tips, too (although that's part of another condition I have called Polycystic Ovary Syndrome, which is a whole nother ball of wax!) I've done some more research here today and am even more convinced I need to do a gluten challenge and get further testing done, particularly a biopsy. Most of the information I am reading is stating that elevated IgG results without antiendomysial positives and IgA positives can be indicative of other conditions, particularly one called selective IgA deficiency, and that if these are the serology results an endoscopy and biopsy are highly recommended. Has anyone else had these results (ie IgG positive, everything else negative)?

Thanks again!
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#4 celiac3270

 
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Posted 24 February 2005 - 03:32 PM

Sorry I didn't go into it more and can't right now--have to get off the computer :). Many people, as you would see at their website, couldn't get better, even on special diets--this goes for various problems such as crohns disease, but has also worked for some celiacs. It's a very challenging diet to implement--it cuts out processed foods nearly altogether, is gluten-free, and is free of so much else--

http://www.scdiet.org
http://www.breakingt...iouscycle.info/
http://www.scdrecipe.com/
http://www.healingcr...in/scd/scd.html

There's a book written about it--the easiest way to start it--called Breaking the Vicious Cycle. You might want to give it a try because if you can really stick to it, you might get some great results.

Have you looked into other things that could be causing your continued symptoms? Allergies, other intolerances, diseases or conditions commonly accompanying celiac, such as lupus? Are there any structural problems that your doctor has looked into? Finally, there is no way gluten is getting into your diet, is there? All it takes is one wrong product to mess up the whole thing--make sure lipsticks and other makeup, shampoos, lotions, are gluten-free--don't lick envelopes (which may or may not have gluten)--the little things. Just make sure you're not getting contaminated.

Keep us posted :).
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#5 flagbabyds

 
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Posted 24 February 2005 - 04:34 PM

just whar coutler said, even the tiniest thing can screw it up especially because now that you are off gluten, you become more sensitive to even the tiniest bit.
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#6 SaucygirlR

 
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Posted 24 February 2005 - 04:48 PM

I'm sure I probably accidentally get some gluten somewhere, although I am very strict about what I eat, how I cook (I'm the only one in my home, so when I got diagnosed I did some major cleaning, new toaster, etc), what kind of toothpaste I use, etc, because believe me, I was very sick of being sick and was willing to do just about anything by the time I got diagnosed. I guess I'm just stuck on the blood test results that I have and everything I've read. From everything I've read, the positive IgG alone isn't an indicator of celiac disease. There's healthy people who have nothing wrong with them that have elevated IgG levels, or it could be caused by having had mononucleosis (the Epstein-Barr virus, which causes mono, stays in one's body as antibodies forever, I guess). I had mono as a teenager. I'm wondering wath some of the blood test results have been for folks on this site and if everyone diagnosed with celiac on this site tested positive for all three (antiendomysial, IgA, IgG) and/or had a biopsy done?

Thanks so much for everyone's responses! I just hate to do a gluten challenge and spend money on another dr. visit and more tests but my blood test results are appearing more and more dubious the more research I do.
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#7 celiac3270

 
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Posted 24 February 2005 - 05:05 PM

I see what you mean--it sounds like you're doing it all right and I didn't think that you sounded careless when you posted--it's just sooo easy to make a mistake somewhere.

Check out http://www.wrongdiagnosis.com/ -- you can search by symptom and maybe you'll find something that matches up with your problems. At least you could find a couple possibilities, ask your doctor about them, etc.
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#8 Guest_BellyTimber_*

 
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Posted 02 March 2005 - 02:27 PM

Pardon my adding my penn'orth:

Without digging my results out what our friends have said about the relative meaning of the individual readings is no doubt so but I do know the gliadin referred to is a component in gluten from four different grains (only not oats where it is avenin).

Your having stopped then started again may have affected readings as well as your symptoms.

The best thing for you to do is, go accompanied where you are going.

Throughout my transition I was seeing a nutritionist qualified with the Institute of Optimum Nutrition (ION), officialdom has got no time for them but they know their stuff and I got a lot of test kits from Great Smokies through her (the stool one is droll to use).

Even if it wasn't going to wash with officialdom (which is nonetheless a great disappointment to me) I knew I was being well guided.

In parallel with this I was doing the same as a friend whom I know to be well guided and was also in touch with another bunch of people making the same changes.

I also read up great amounts about the whole subject.

My advice to you is you have made a great start getting in touch with us (says he on his first evening's membership) but do be in touch with more & more people and information.

And spend money seeing a person from the ION or equivalent, not someone who doesn't know things.

My own experience is that I'm still - 2 years off gluten after 48 years eating gluten - in a phase of very variable symptoms. Also I find it impossible to go 100% gluten free because of small amounts in myriad products, unlabelled products, difficulty planning, living single & dyspraxic, finding gluten-free directories too complicated to use in practice ...

The people who do best are couples who are newly retired, their families grown up, neat and methodical, time on their hands. Even if or especially if only one of them's the celiac.

We need to find out from someone who has gone there, what happens to them when they go back to gluten after being off it. In fact that's why I joined this discussion forum only this evening. Maybe you are my answer.

For you, keep looking for more similar answers but I think the meaning of them will probably be, that folks like you & me should persevere as far as possible in the gluten-free diet otherwise the complications may get worse and the recovery slower and slower?

Anyone else got more thoughts & experience on this please.

Wishing you every improvement, not least in morale.

Michael
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#9 Guest_BellyTimber_*

 
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Posted 02 March 2005 - 04:35 PM

Include good quality very high strength probiotics (several billion live organisms per capsule) and good quality fish oils (Efalex or EyeQ)

- decent probiotics - you and whose army! Without them you and I are outnumbered

- fish oils - since I started on these I felt the sun was coming out (am a bit irregular now)

Person from ION or equivalent should be in the know about these things, also digestive enzymes to combat reflux. Antacids are the exact wrong thing.

Best wishes

Michael
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