Yet Another Negative Test Question

[Nilnala]

Hi everyone.

I really am not sure what to think. I have had digestive symptoms all of my life, and the longer I went on I accumulated more overall system stuff (chronic pain, insomnia, muscle weakness, and bone issues. When several of my electrolytes (including phosphorus and magnesium) fell below normal limits, my doctor tested me for celiac disease (blood tests, four of them I think). The test came back negative. Meanwhile, I was still having a gazillion systemic symptoms including several severe digestive ones and my supplementation wasn't sticking at all, and my levels continued to fall.

This went on for months, until out of desperation, I saw a nurse practitioner (instead of my usual doctor) and she strongly recommended going on a gluten free diet for two reasons, the first being that apparently when magnesium and phosphorus go down together their first suspicion is celiac and that 10 percent of celiacs test negative anyway.

I went gluten free that very day. The funny thing is, especially because I had no guarantee that this was going to work, be a solution, or even help me feel better I thought that I would really miss some of my favorite junk foods (Papa John's Spinach Alfredo Pizza, for example. I don't. Because those foods are so associated in my mind now with the horrible stomach cramps, the cold sweats, the desperate sprints for the bathroom...etc...I really don't miss them at all. The first gluten free meal I ate didn't make me immediately better, but I can tell you that it felt easier to digest. But as the days and weeks continued I started noticing massive changes.

1) My 11 years of severe and intractable insomnia (possibly due to low magnesium) are coming to an end. I'm getting off of my sleep meds and actually for the first time since it begin, I am able to feel tired and sleepy on my own.

2) My energy is really increasing. Things that seemed to require so much physical effort seemed much easier.

3) My digestive symptoms are SO much better and only seem to recur if I'm exposed to gluten (at a restaurant a few weeks after I went gluten free, I accidentally ordered a cup of potato soup (big DUH moment there!). I realized the mistake before I started eating it, but assumed since my tests were negative that I probably just had wheat sensitivity and that there was probably not that much flour in it, and so I ate it. Boy was that a mistake.

4) My chronic pain isn't gone, but it is easing up.

5) This is the strangest thing, but I am getting my visual memory back. I used to be able to remember most of what I looked at or read, numbers, words, facts. That stopped about the same time that the insomnia started, but now my visual memory is improving, my concentration, and my processing and learning speed is picking up considerably.

And most importantly,

6) For the first time in months, all my electrolyte levels were back up within the normal range. The supplementation is working now.

Anyway, I guess my basic question is, could a wheat sensitivity that is not celiac cause enough damage to my digestive system that my ability to absorb important nutrients and electrolytes would be impaired? or does the presence of these nutritional deficits that began to resolve when I stopped the gluten make it more likely that I am one of those 10 percent who test negative?

Thanks for reading this long post and listening!

[wschmucks]

I'm not a Dr-- but I say no. Thats the difference between Celiac and intolerance/ allergy; Celiac causes intestinal damage but intolerance does not. If youve been gluten free and you really feel you've improved dramatically then keep doing it! Dont look to a test to tell you what your body is already telling you. Once youve reached a level ground health wise if you want to know for sure...order that pizza and have a piece, but beware some people take several glutenings before they actually react. I'm not reactive unless I really skrew up, but the internal damage to my intestines and immune system is still happening. If youre feeling better, just stay on the road youre on.

[Nilnala]

I'm not a Dr-- but I say no. Thats the difference between Celiac and intolerance/ allergy; Celiac causes intestinal damage but intolerance does not. If youve been gluten free and you really feel you've improved dramatically then keep doing it! Dont look to a test to tell you what your body is already telling you. Once youve reached a level ground health wise if you want to know for sure...order that pizza and have a piece, but beware some people take several glutenings before they actually react. I'm not reactive unless I really skrew up, but the internal damage to my intestines and immune system is still happening. If youre feeling better, just stay on the road youre on.

Thank you for your reply! Don't worry, I have already decided that most likely I will not choose to go back on gluten for testing again ever, but I certainly am not going to even consider it at all until my electrolytes and vitamins have been stable for at least a year.

I guess part of the reason I would prefer a solid diagnosis (but not so strongly that I'm going to go gluten for several months and get an intestinal biopsy!) is that for so long doctors wrote my symptoms off as "mental" (being female, 21 at the time, and having your first symptoms being digestive and insomnia is a perfect recipe to be written off as crazy without so much as a TSH) simply because they couldn't explain them. Frankly, they didn't start believing me at all until they had lab results in their hands (in October when I got that test I was 31, I just turned 32 this month) that proved something physical was wrong, and I won't even begin to discuss the hassle my ex-doctor gave me when I asked her for the first electrolyte test that proved something was wrong and a thyroid panel based on the recommendations of my counselor. I never ever want to hear the words "evidence-based medicine" in such a condescending tone again.

I feel very sorry for my grandmother on my mother's side. She had Rheumatoid arthritis but always had a multitude of physical complaints and always felt really physically bad. I cannot prove it, but I think it likely that she might have had undiagnosed celiac or GI as well.

I also wanted to sound out whether I should post on the rest of the Celiac forums even without a solid diagnosis, but it appears that it is pretty common and you guys are open to those of us who fall in the who knows? category!

Thank you again!

[Jestgar]

Anyway, I guess my basic question is, could a wheat sensitivity that is not celiac cause enough damage to my digestive system that my ability to absorb important nutrients and electrolytes would be impaired? or does the presence of these nutritional deficits that began to resolve when I stopped the gluten make it more likely that I am one of those 10 percent who test negative?

I would say that Celiac/gluten intolerance is a poorly understood disease. For years people have believed that the only manifestations are a damaged gut, and that is all they tested for. All of the antibody tests are based on someone having a damaged gut, or, more specifically, having damage in the upper third of your small intestine that leads to flattened villi. If you have any other effects from gluten, no one has tried to figure out a test for that.

So I would say, don't waste your energy wondering about what to call yourself. Gluten makes you sick, and the medical system isn't yet able to tell you specifically where and how.

[WheatChef]

Eating a toxin or bacteria doesn't necessarily cause lasting damage to your intestines but it will certainly cause your intestines to "flush" themselves and to voluntarily choose to have less activity. Increased flushing would not only reduce the amount of digestive enzymes available for normal nutrient absorbance but also can easily upset normal intestine bacteria causing more malnutrition. You don't actually have to have autoimmune related cell necrosis in the intestine to initiate malnutrition.

[Nilnala]

I would say that Celiac/gluten intolerance is a poorly understood disease. For years people have believed that the only manifestations are a damaged gut, and that is all they tested for. All of the antibody tests are based on someone having a damaged gut, or, more specifically, having damage in the upper third of your small intestine that leads to flattened villi. If you have any other effects from gluten, no one has tried to figure out a test for that.

So I would say, don't waste your energy wondering about what to call yourself. Gluten makes you sick, and the medical system isn't yet able to tell you specifically where and how.

One thing I have not done is found out what each of my levels actually were. It appears that some doctors will take only one or two high numbers and declare the whole test negative.

EDIT: Oops, I wasn't done replying when I clicked submit. It increasingly looks like trying to find the exact label won't be happening. I am just a person though who likes definitive answers. It is too bad with the high prevalence of other forms of wheat and gluten sensitivity that this disease is so poorly understood. How many poor souls out there keep eating their pizzas and hamburgers and wonder why they feel so rotten all of the time?

[Nilnala]

Eating a toxin or bacteria doesn't necessarily cause lasting damage to your intestines but it will certainly cause your intestines to "flush" themselves and to voluntarily choose to have less activity. Increased flushing would not only reduce the amount of digestive enzymes available for normal nutrient absorbance but also can easily upset normal intestine bacteria causing more malnutrition. You don't actually have to have autoimmune related cell necrosis in the intestine to initiate malnutrition.

If my malnutrition was the result of flushing, how long would it take for the malnutrition to resolve? I have been gluten free for I think about 2 months, and to maintain the mag and phos levels I still have to supplement. Just wondering what I have to look forward to Cause let me tell you Phos-nak is NASTY!

[WheatChef]

If my malnutrition was the result of flushing, how long would it take for the malnutrition to resolve? I have been gluten free for I think about 2 months, and to maintain the mag and phos levels I still have to supplement. Just wondering what I have to look forward to Cause let me tell you Phos-nak is NASTY!

I'll let you know as soon as mine resolves . At just over 2 months as well and malnutrition signs have decreased but are still there at some level. Some of my nail ridges have stopped being formed and some of my unpigmented hairs are growing in darker, but not all of them yet. Of course in those 2 months of being "gluten-free" I've been poisoned at least 4 times so I'm definitely not fully functional yet.

[Marz]

Some of my nail ridges have stopped being formed and some of my unpigmented hairs are growing in darker, but not all of them yet.

Wait, what? Malnutrition can lead to unpigmented hairs? Is there a gluten-related reason why I'm getting several white hairs in my 20s? I thought it was just bad luck/genes

[Skylark]

Congratulations on feeling better! I self-diagnosed with an elimination diet. After I'd been gluten-free for a few months I told my doctor that I though I was probably celiac. He agreed when he heard all the problems that went away and offered blood tests if I did a gluten challenge. When he told me how much wheat I would have to eat, I laughed at him. It wasn't worth sacrificing my health for over a month (plus recovery time) to possibly have a label saying I have to eat the diet I'm already following.

Of course you're welcome here. Jump right in and learn what you need to stay healthy!