Negative Dietary Response, Inconclusive Test Results?

[TheOtter]

Hi all. I've been meaning to introduce myself at some point, and just never got around to it. I do have a quick question (I hope), and I'll post my story in one of the "Share your story" threads soon. [note: turns out it's not a quick question. Sorry!!]

Back in March, I saw a doctor for the first time in a while, and for the first time ever, this new doctor was concerned about some problems I'd been having that my delusional self didn't think were all that abnormal - like someone else around here said, who compares bathroom habits these days?? The short list includes: frequent BMs (when asked, "More than 3 a day?" I said, "Are you serious?"); burping, flatulence, and bloating; mysterious joint pains, chronic fatique (partly because of the gastro stuff making it difficult to get to sleep on time, I imagine), chronic post nasal drip / phlegm, body acne... ummm... I think that's about it.

Anyway, he said he suspected some kind of malabsorption problem and ordered some bloodwork done. When that came back, they called me and said I had tested positive for celiac sprue, to stop eating wheat, give it 6 months and come back for more tests (and see how you feel). Well, six months later, there was virtually no change in my symptoms (the only thing is I seem to be able to tolerate hunger better now - I used to get a bit woozy and irritable between meals). All other symptoms were the same. The blood test numbers were lower, but still high.

I also took a lactose intolerance test (gross drink [which did not make me feel ill, btw], repeated blood samples), which apparently came back "medium." Lactase enzymes have not had any easily discernable results, good or bad.

I can't seem to find my September results, but here are the originals, from Quest Diagnostics:

Antigliadin antibody, I 72 (Abn: H) (0-19 normal)

Antigliadin antibody, I 14 (0-19 normal)

Tissue transglutaminase 7 (0-19 normal)

I'm sure you all understand, I have so many questions, but I'll try to keep it brief if it's not too late for this one post:

1. Any idea why the first two lines seem to be the same thing, but with one high and one normal? Maybe it's cut off, and they are two different antigliadins?

2. I'm guessing I'm also sensitive to something else, but is it possible (or probable) that gluten is not my problem at all? I've been reading more and more about intolerances and delayed food allergies, and I'm wondering if these numbers may not incriminate gluten at all...

3. What would you do next? Oh, I did find out (from this forum) that the Lactaid I was using until a month ago was not gluten-free, so it's entirely possible I've only been truly gluten-free for about a month now, but still with no change for better or worse.

I'm scheduled to see a gastroenterologist next month. Part of me (a big part) wants to just eat anything for a while and start all over after seeing him, maybe with some better guidance. I mean, eating wheat never specifically made me feel sick. I have always had more trouble with large amounts of veggies (salicylates?), than I have with wheat. My comfort food used to be an english muffin with peanut butter, or a bowl of cereal... So, given that I wasn't as gluten-free as I thought I was, I'm rationalizing that starting (again) gluten-free in a month or two isn't much different than continuing it now. Also, since the tissue transglutaminase level was normal, and I saw someone post (can't find it) that other things can raise the IgA level, well, you can see where I'm going with that.

Silly rationalization, or legitimate "what the heck - after all this, what's the difference with a couple more months of gluten, considering I don't feel any different off of it than I did on...?"

--Rob

[CarlaB]

Since your weren't completely gluten-free, you weren't on the diet for six months ... only one month. Many of us have to eliminate dairy as well. Casein is a common problem for celiacs, so maybe if you gave up dairy completely and gluten you would see a difference.

If you get 100% gluten-free and 100% casein free and see no difference, I'd start looking for something else.

Usually there are two IgA -- one is total -- but it's peculiar that yours are not marked as to what the are specifically.

There have been many around here who find out they have Lyme Disease ... your symptoms fit that as well ... you might google it and see what you think. The joint pain is the one that's a good fit.

[Nancym]

You might want to give an elimination diet a try. The mucus issue sounds like dairy to me. And it isn't just lactose, there are lots of various proteins in dairy that people can have problems with. The Paleo diet works pretty well as an elim sort of diet.

Also it sounds like you haven't been truly gluten free. You've really got to be fanatical about it.

Some other foods a lot of people have issues with include soy, nuts, legumes.

Have you had your blood tested for A1C? It could indicate whether you're developing a problem with blood glucose.

[TheOtter]

I need to ask my nurse for a copy of all of the blood work my doctor had done, since it doesn't show up on my profile on their website. Until then, I'm not entirely sure what they tested for... A1C might have been in there, since he did say he was going to test for some general metabolic things. Unfortunately, I didn't understand half of what he said, as I thought I'd get a readout of all of it to go over later. I'm sure I can get one if I ask.

So far, the Lactaid Ultra is the only thing I've been able to determine that may have been sneaking some gluten into my diet. Other than that (I think), I've been extremely careful with foods and ingredients. It does tick me off quite a bit that even though intolerances seem to come in groups for a lot of people, a product intended for someone with a food intolerance would not mark that there is gluten in their product - especially when they have another version (the regular) that is gluten free. Boggles the mind...

After reading a lot of messages around here, I've started to suspect dairy protein. I think I'll have to try cutting that out and see what happens. I'm also curious what the specialist will say.

I'm very tempted to go ahead and enjoy the holidays, and then take up an elimination/challenge diet after the New Year...

[Mia H]

I have had chronic fatigue also and that is what got me here.

I saw a naturopath for awhile after every dr and specialist told me everything was normal and suggested an antidepressant. The naturopath suggested giving up gluten for 3 months. I did. I really didn't think I noticed much difference...until I tried it again. I had given it up a couple of times before for a month at a time, with no difference. But when I gave it up for a full 3 months and tried it again, I was sick! My stomach bloated out, I felt like I was hit by a train. It was as bad as the flu.

So for me it just took a lot longer to see a difference and I"m still gettting better. I've read on this site it can take 6-12 months of strict gluten-free to heal.

I also have the sinus thing, puffy head feeling, achy, stiff especially in the morning. (fibromyalgia perhaps)

I gave up all dairy and it took about a week to notice some changes but it took at least a month to notice real improvement. I could get right out of bed like a 37 year old rather than an 87 year old.

It is a hard diet, but I do feel much better after being on it awhile. I still may have more to eliminate but I will wait a year and see how I am than. This is hard enough!

(I tested negative for celiac but tested positive for gluten & casein intolerance with Enterolab.)

If it were me I would enjoy the holidays! Start in the new year! But give it a good try-it can change your life.

Mia

[TheOtter]

CarlaB: Thanks for the suggestion. I'll keep the Lyme disease in mind, especially if Gluten-free Casein-free doesn't do any good after a few months. Are ticks the only way to get Lyme disease? I do remember getting bitten by a tick (I think) one time about a decade ago, but some of my symptoms predate that by quite a while. I don't know if that makes it any less likely, or what.

I suppose I'm still in the kicking and screaming phase. I resigned myself to a life without gluten, and so if that's truly it, then ok. But the thought of cutting out other groups... I guess it'll have to be ok then, too. I don't know how some of you handle it - no this, no that, no other things. Plus, the frustration of thinking you're doing the right things for months, only to find out you missed something. Think of the donuts I might as well have eaten (maybe)!!

Also, thanks for sharing, Mia H. I'm glad to hear you're feeling better. I hope you can get all the way there! I think I've pretty much decided to eat whatever for 6 weeks or so, unless I hear from someone with a good reason why I shouldn't... Then I can reset, go through everything I may have missed with gluten, get a handle on the whole casein thing, and see how I feel come Spring.

[chrissy]

your original test results DON'T show that you are positive for celiac disease---they just show that you have raised antigliadin levels, which can be caused by conditions other than celiac disease. the TTg test is the best blood test for celiac disease and your levels were normal. if it were me, i would want to investigate further before resigning myself to a gluten free diet.

[Guest nini]

I'm going to go against my usual advice and tell you to go ahead and enjoy the holidays, eat whatever you want but make sure you get plenty of gluten in your diet, then go see your gastroenterologist in 3 months... then if he suspects Celiac, you can get tested for it again... Right now you haven't been truly gluten-free long enough to show any conclusive results, some people take 6 months to two years to show ANY improvement.

Other than that try the elimination diet and be vigilant about it, if you are going to go gluten-free, you can't do it part of the way, you have to go 100%, 98% isn't enough.

A lot of us have other intolerances besides gluten that cause us to not get well right away, some of us have acquired other autoimmune disorders. Keep searching, don't give up. Gluten may or may not be part of your health puzzle, but until you go see the gastroenterologist, don't eliminated it from your diet...

[TheOtter]

Thanks for the replies, both of you as well. Just what I wanted to hear (obviously).

I realise it's a 100% thing, and I thought that was what I was doing. That's what makes it so frustrating. I guess I never thought that a supplement for food intolerance would contain gluten without being so marked. To me, that's just bizarre, but there you go.

[CarlaB]

Rob, half the people with Lyme never remember getting bitten, so it still could be it. Just keep your options open. I know I react to gluten and casein, but it just wasn't enough eliminating them .... I think my intolerance is actually due to another condition, most likely, Lyme in my case. Check out this list of symptoms and you'll see why I mentioned it to you. Open Original Shared Link I don't just mention it to everyone on the board!!

I have no doubt that gluten and casein are causing trouble for you, the intolerance does have the possibility of being a symptom of something else.

[TheOtter]

I certainly didn't mean to imply that I wasn't going to take the Lyme suggestion seriously - I appreciate any possibilities! But since (according to that site) blood tests are insufficient to test for Lyme, it seems to me I should rule out dietary problems first, right? Or are you saying that the Lyme disease could in fact be causing the dietary problems?

Of their symptom list, I count about 10, with maybe 4 more questionable ones. I did grow up visiting Canada a lot, so if it's very common there, I certainly couldn't rule it out. Is there any way of getting a positive diagnosis for Lyme without eliminating the other possibilities first?

--Rob

[CarlaB]

I certainly didn't mean to imply that I wasn't going to take the Lyme suggestion seriously - I appreciate any possibilities! But since (according to that site) blood tests are insufficient to test for Lyme, it seems to me I should rule out dietary problems first, right? Or are you saying that the Lyme disease could in fact be causing the dietary problems?

Of their symptom list, I count about 10, with maybe 4 more questionable ones. I did grow up visiting Canada a lot, so if it's very common there, I certainly couldn't rule it out. Is there any way of getting a positive diagnosis for Lyme without eliminating the other possibilities first?

--Rob

I meant that if you don't get better on the diet, then there is some underlying problem. Since joint pain is characteristic of Lyme, it could be it. If you only have ten symptoms on the list of 75, then it's probably not likely for you! I have 47 of the symptoms! But, if you don't have good dietary response, I would definately keep looking .... there could be something else. I know, I for one am not going to accept that the rest of my life is going to be like this!! I still do better 100% off gluten, it's just not the only answer for me. I mainly wanted to bring up that it may not entirely be dietary, so keep looking if it's not.

Lyme is not a diagnosis after eliminating other possiblities, so you can get a diagnosis, but you need to see a doc who specializes in it. I'm going all the way to NY to see one!! But, like I said, I have 47 symptoms ... the main thing is, don't give up! Feeling bad is NOT NORMAL!!!