If Not Celiac, What Else?

[Serissa]

Hello,

I was wondering if anyone had any suggestions to diseases which might be similar to celiac disease.

The reason I ask is because after spending a lifetime with all symptoms of celiac disease without knowing it, out of exasperation I tried a gluten free diet. After only a few months I've experienced improvement on literally every area concerning my health, from a diminution of fatigue to an increased absorption of iron and vitamin D (my iron levels have been so bad that they have resulted in two hospitalizations in three years; it's the first time in decades I seem to be absorbing nutrients), reduction in stomach pains, functioning bowels... in short, it's been close to miraculous. Even my GERD has improved a little bit. If I had seen it on TV rather than experiencing it myself, I'd dismiss it for being a scam, too good to be true.

The only thing runing this gluten free bliss is that the doctors can't find any indicators of celiac disease neither in my blood work nor in my biopsy. Apparently I don't even have the right type of tissue to have celiac disease. So while I'm waiting for the appointments to all kinds of experts and gurus, I was wondering if anyone had any experience or suggestions to what other conditions could it be if not celiac disease?

Thank you for your time

[ravenwoodglass]

Were you already gluten free when you had testing done? That will cause a false negative on testing since if you are already gluten free your antibody levels will go down. Which is what we want the diet to do. There are also pretty high rates of false negatives on both blood and biopsy even if we are on gluten. Your recovery on the diet is showing you that the diet is needed. If you need a doctor derived diagnosis then you need to go back to eating gluten daily for at least 3 months, and you still may get a false negative. If your body reacts badly to challenging gluten that is pretty diagnostic in itself.

I assume when you say you don't have the right 'tissue' that you are refering to the gene tests. Most places only check for 2 of the possibly up to 27 celiac associated genes. While most celiacs are thought to have one of those two genes there are many of us that don't.

[Serissa]

Thank you so much for your quick reply, Ravenwoodglass. I sincerely appreciate it

I was not gluten free prior the blood testing. I still ate bread 2 - 3 times a day and had my pasta about 3 - 4 times a week. I was however already eating several gluten free meals by sheer instinct as trial and error (mostly error) had already led me towards gluten free snacks and meals without me even realizing it.

My doctor had however led me to believe that it was extremely rare for bloodwork to be wrong. I wasn't aware that it is an actual possibility that I might still have celiac disease despite negative blood results. That's interesting information, to say the least!

I swear that even my brain feels sharper without gluten. It's like I've exited out of the fog and very slowly, but steadily, all my pain and problems are diminishing or even disappearing. I guess my husband is right when he claims that I should be content with finding something that works and not stress too much about not knowing why it works. Too bad that's not going to happen any time soon! )

Also, thank you for sharing your signature. It gave me some needed perspective. Suddenly having been misdiagnosed for 28 years doesn't seem like that much of a big deal.

[AVR1962]

My doctor had however led me to believe that it was extremely rare for bloodwork to be wrong. I wasn't aware that it is an actual possibility that I might still have celiac disease despite negative blood results. That's interesting information, to say the least!

I swear that even my brain feels sharper without gluten. It's like I've exited out of the fog and very slowly, but steadily, all my pain and problems are diminishing or even disappearing. I guess my husband is right when he claims that I should be content with finding something that works and not stress too much about not knowing why it works. Too bad that's not going to happen any time soon! )

Also, thank you for sharing your signature. It gave me some needed perspective. Suddenly having been misdiagnosed for 28 years doesn't seem like that much of a big deal.

I wish the tests were more accuate but they are not. Docs sound very sure but I think your gluten-free diet speaks for itself. Botton line in all of this is we have to do what is best for ourselves regardless and if you feel the gluten-free diet is making your health bettr then by all means stick with it. Next time you visit your doc and have questions or issues you can tell him that you have done better on a gluten-free diet. At least it gets into your records incase that info may help you down the road.

[Skylark]

You are most likely severely gluten intolerant. Welcome to the gluten-free club!

[Roda]

You could be a sero negative celiac and had a false negative biopsy. The other side of the coin is that you don't have celiac but are gluten intolerent. Either way it sounds like you need to be gluten free. My youngest son has celiac with positive blood work, symptoms that resolved gluten free and return of the sympoms upon reintroduction of gluten. We did not do a biopsy, felt his history and positive bloodwork and response was proof enough. My oldest son is not celiac, according to every test he has had over the years. He had repeated negative blood work (4 times now) and a negative biopsy in August. I finaly made the decision to trial him gluten free anyway because of his history and his slow/lack of growth. I have seen improvemnets already. I'm going to "challenge" him in December to see what his reactions are. He will almost certainly remain gluten free afterward. I believe he is gluten intolerent. I think I may have been gluten intolerent to some degree as a child and eventually turned to celiac as an adult. I want to save him the problems I had.

[Serissa]

Thank you so much for your positive replies everyone!

You've made my heart feel a lot lighter

My doctor has thankfully been very positive and intrigued by my gluten free diet and the results it has already achieved. He simply cannot seem to explain them as according to his text book negative blood results = "OMG you must be some weird alien of sorts, lets probe you!"

You are most likely severely gluten intolerant. Welcome to the gluten-free club!

You could be a sero negative celiac and had a false negative biopsy. The other side of the coin is that you don't have celiac but are gluten intolerent.

That makes so much sense. Gluten intolerant is a description I can feel at peace with. Thank you!

I think I may have been gluten intolerent to some degree as a child and eventually turned to celiac as an adult.

I had no idea such a thing was possible. Such an approach would actually shed a lot of light on my case as well. While my problems and stomach pains have been constant through-out my entire life, the fatigue and the malabsorbtion problems didn't really escalate until I reached adulthood. A shift in severity of the sort you explained makes a lot of sense.

I want to save him the problems I had.

Your son is lucky to have you! Keep on fighting!

Again, thanks for all the thoughts and inputs. You made me feel a bit less like an experimental alien rabbit of sorts