Results Back - Negative, What Now?

[plumz64]

My results came back negative to full panel blood test for coeliac and stool test for lactose intolerance. My B12 levels are normal, but I am anaemic.

The doctors first port of call was to put me on iron tablets. He said the results would indicate that I have IBS.

I asked him if this meant that I was imagining my reaction to gluten and he said, No that my reaction was very real it just wasn't affecting me in a way that would show up in tests. His advice was to stay gluten free for most of the time but to maybe allow myself something once a week or once a fortnight and see how I feel. He said the other way to approach matters was to ensure that meals I prepared myself were gluten-free, that I ordered gluten-free were possible when out, but didn't fuss too much about what could get past me from time to time, like the occasional slice of pizza, some lollies etc.

As for my assumed lactose problem, I actually think it might be coffee, cos I tended to get reactions when I drank lattes etc. I switched to soy and still have the same reaction, so maybe it's not the milk at al, especially seeing as I can eat cheese and yoghurt with no problem. I suppose the best way to tell is to have a cup of black coffee and see how I feel.

Any words of wisdom?

[mushroom]

My results came back negative to full panel blood test for coeliac and stool test for lactose intolerance. My B12 levels are normal, but I am anaemic.

The doctors first port of call was to put me on iron tablets. He said the results would indicate that I have IBS.

I asked him if this meant that I was imagining my reaction to gluten and he said, No that my reaction was very real it just wasn't affecting me in a way that would show up in tests. His advice was to stay gluten free for most of the time but to maybe allow myself something once a week or once a fortnight and see how I feel. He said the other way to approach matters was to ensure that meals I prepared myself were gluten-free, that I ordered gluten-free were possible when out, but didn't fuss too much about what could get past me from time to time, like the occasional slice of pizza, some lollies etc.

As for my assumed lactose problem, I actually think it might be coffee, cos I tended to get reactions when I drank lattes etc. I switched to soy and still have the same reaction, so maybe it's not the milk at al, especially seeing as I can eat cheese and yoghurt with no problem. I suppose the best way to tell is to have a cup of black coffee and see how I feel.

Any words of wisdom?

This whole area of non-celiac gluten intolerance is still very new and nobody really knows a lot about it. I really don't know if I am celiac or gluten intolerant, because I was never tested, but I will tell you my experience for what it's worth. My first symptoms (apart from an earlier gut infection with c. Difficile and a candida overgrowth in the small intestine) was lactose intolerance. I could eat cheese, yogurt, sour cream with no problem, but milk, cream and ice cream were gastric disasters. I also knew, from the doctor who tested me for c. Diff. that I was mildly allergic to soy (he did skin testing), so I gave up milk. But I had had problems with what I thought was corn, with the gas and bloating.

After years of complaints to doctors I finally decided to stop eating gluten after I was diagnosed with psoriatic arthritis, because I read somewhere that a gluten free diet was used to treat some forms of rheumatoid arthritis. I was surprised that that alleviated my gas and bloating and diarrhea. I bought a lot of gluten free substitute foods, bread, cookies, etc., and broke out in a horrible rash (in addition to my psoriasis) which turned out to be coming from the soy that they put in so many gluten free foods. I had only been checking the labels for gluten, not soy. I learned from this forum that many people who are intolerant to gluten are also intolerant to soy. So I would suggest that you try almond or hemp milk as an alternative to soy, although some people do have problems with coffee too (I can't take the caffeine )

So the current thinking is if you are "merely" gluten intolerant and not celiac, that you have not done damage to your small intestine and therefore, with intact villi, you should be able to digest lactose. Since you have not had the biopsy, you do not know if you have intact villi, but if you are in fact lactose intolerant then it would seem to indicate that you have at least damaged the tips of the villi which produce the enzyme to digest milk. It would be really worthwhile knowing this, because there is often "false negatives" as they are currently called on the celiac blood panel, and also negative biopsies for people who respond positively to the gluten free diet. And that's where this whole grey area of gluten intolerance comes in. Is it just a pre-celiac condition, or is it something else? There have been genes identified individually for both celiac and gluten intolerance. Researchers are currently formulating and conducting studies on this issue.

My B12, folate and Vitamin D were low, but ferritin was fine. You are anemic but apparently other levels are okay? Were the others checked? Lack of absorption of nutrients is also indicative of some intestinal damage and that is also why it is all so confusing.

Your doctor seems to be sitting on the fence about gluten intolerance. The truth of the matter is that whether you are celiac or gluten intolerant, the treatment is the same--strict avoidance of gluten, not cheating, no holidays. Because gluten intolerants can do as much damage to themselves as celiacs, is my belief. The truth of the matter is that there currently is no definitive answer.

Here is a link which you might find interesting:

Open Original Shared Link

While this is merely one take on the subject, it is one I subscribe to.

I am sure you will get some other responses.

[nora-n]

There is a test more geared at gluten intolerance, the tests from Enterolab.

Celiac or gluten intolerant, you must be totally gluten free also with gluten intolerance.