Does This Sound Like Celiac?

[lizzyann95]

Alrighty, so this is my first post....I'd love y'all's opinions on this!

I am 17 and about six months ago a doctor ordered several blood and saliva tests. The blood tests came back negative for gluten antibodies, but I was serum IgA deficient. The blood tests also showed that I have a lot of gliadin antibodies (I think my level was a 24 and the highest normal was 19). I was also extremely vitamin D deficient - my level was a 4 with normal being at least 50.

My doctor declared me "gluten sensitive" and said I definitely did NOT have Celiac disease, put me on a gluten-free diet and sent me on my way.

Going gluten-free made me feel so much better - my brain fog almost completely went away, I'm not bloated or **shudder** gassy anymore, I'm not so nauseous, I can sleep better, joint/body aches and pains lessened, rash that I'd had all my life went away, etc.

But I live in a VERY gluten-infested home (everyone else in my family eats lots of gluten and isn't careful to clean it up well at all), with constant CC threats in the entire kitchen. I have my own special section in the pantry with gluten-free foods, but don't have my own utensils, pots/pans, plates/bowls, etc..

Now, I'd been told by my doctor that I could have a small amount of gluten and not have any reaction to it. How small this amount was, I didn't know. But I went to a new church where everyone was taking communion. Since I didn't want to stick out and be different, I took a communion wafer - stupid, STUPID mistake!! I thought surely it wouldn't affect me since it was so small, right?

Wrong. a couple of hours later, I came down with flu-like symptoms: full-body aches, nausea, upset stomach, coughing, brain fog, fatigue, etc. I felt AWFUL. I'd felt completely fine that morning, but in the afternoon, after having the gluten communion wafer, I basically had the flu. It seemed that my body was treating the gluten like the flu virus - and like the flu, it didn't go away for 4-5 days.

And now, 6 weeks after that lovely fiasco, almost the same thing has happened. I've come down with the exact same flu-like symptoms hours after what must have been CC - I ate a protein bar that said it was gluten-free but "processed on equipment that also processes wheat". I'm not sure if it definitely had gluten in it, or if I got gluten in me from the gluten-infested kitchen. I'm still laid up in bed with little energy, little concentration, and all of the flu-like symptoms from before.

What makes me wonder about Celiac is the fact that I was vitamin D deficient, all the crazy symptoms went away, and my reactions to eating gluten. Does this sound like Celiac or just a gluten sensitivity? any and all opinions are very much appreciated - and if this does sound like a gluten reaction, ideas on how to recover more quickly would be great as well! thanks

[psawyer]

Welcome!

"The blood tests came back negative for gluten antibodies, but I was serum IgA deficient."

If you were serum IgA deficient, then any IgA-based test will likely show a false negative. Total serum IgA must be normal for the results of other IgA tests to be valid. If, however, an IgA test shows even a weak positive under those conditions it should be taken positive.

If you have the complete results, post them here (including the control ranges) and we may be able to help.

Your symptoms (including the vitamin D) are consistent with celiac disease.

[mushroom]

Welcome, lizzyann.

If all tests your doctor ran were IgA based, and you are IgA deficient, then your tests are meaningless. Do you have a copy of the results to post here -- we would be happy to take a look at them and give an opinion. You would need to post the lab ranges too.

Celiac diagnosis is a very uncertain thing, and is confounded by non-celiac gluten sensitivity, for which there is no test -- it is a diagnosis of exclusion. Doctors are only just becoming aware of it and researchers just starting to do studies.

Your doctor should not have told you you could have a small amount of gluten -- there are very few gluten sensitives who tolerate even small amounts of gluten. The only possible exception being the silent celiacs, and they have a problem because they cannot tell by symptoms when they have ingested gluten and thus damaged their bodies. So I am saying that you should not believe there is any such thing as "just a little gluten sensitivity" which we like to say is akin to saying "I am just a little bit pregnant"

The current thinking is that the non-celiac gluten intolerants (NCGI) do not suffer internal damage the way celiacs do. The definition of celiac is that they must have intestinal damage (or, as is now recognized, dermaitis herpetiformis, the skin version of celiac). I would not be surprised, however, if later research reveals that those currently labelled NCGI also suffer damage, just different damage.

So what I am saying in a roundabout way is that all gluten intolerants, whatever the diagnosis, should avoid gluten to their utmost ability. Living in a gluten infested home with people who are not looking out for your safety is a problem. Now that they have seen how sick you get from just a little, can you not persuade them to be more careful?? Presumably they would want you to be well.

I wish you well in convincing your family to look out for your health.

Edit: I went away in the middle of this post and Peter beat me to it.

[lizzyann95]

Thanks so much, both of you

Alright - here are the results. The doctor tested a LOT in my opinion! haha.

Non-fasting Insulin: <3 - depressed ( normal = 5-20)

Progesterone: 16 - depressed (normal = 22-100)

SIgA: 8 - depressed (normal = 25-60)

Gliadin Ab, IgA: 21 - positive (positive = >15)

IgG: 814 - low normal (normal = 724-1611)

IgA: 169 - low normal (normal = 55-377)

Vitamin D: 4.4 - deficiency (normal = 50-100)

TT. IgA Ab: 1.6 - normal (normal = <20.0)

TT. IgG Ab: 1.5 - normal (normal = <20.0)

There were a LOT of other vitamins, etc tested that were normal. I just listed the things I thought might be relevant

Thanks for taking the time to look over this!

[rosetapper23]

With a low Vitamin D level and a lifelong rash that resolved on a gluten-free diet, I'm leaning towards your having actual celiac disease. Your doctor was wrong to indicate that you didn't have it, though very few doctors seem to know much about celiac. It sounds as though you are a very sensitive celiac, too, so you should definitely begin to amass pots, pans, bowls, baking sheets, and utensils for your own use. At age 17, you may be moving out soon, so it's probably a good idea to begin collecting what you need. Now that you've been gluten-free for a while, you probably cannot get an official diagnosis for celiac. However, you may be able to use these tests to convince another doctor to make the celiac diagnosis if you need something in writing for a special food plan if you go on to college.

In an article that I read a few years back about studies that were done on products manufactured in facilities where gluten-containing products are also manufactured, here is what was presented: There is a 30% chance of being glutened from a gluten-free product that is manufactured in the same facility as gluten-containing products, and there is a 70% chance of being glutened from a gluten-free product that is manufactured on the same equipment as gluten-containing products. Personally, I don't eat any such items--it's so not worth feeling ill afterwards.

You sound very well educated on the topic of celiac, and I'm proud that someone so young is addressing this matter with such maturity. You have a long, healthy life ahead of you because of the decisions you're currently making--way to go!

[mushroom]

Your IgA, while on the lowish side, is not low enough to invalidate the results. but your Gliadin IgA is a definite positive while your tTG scores are negative.. As rosetapper says, couple that with your horrendously low D, and you do sound to be celiac. Did your doctor, when doing all the vitamins, test your B12 and your iron/ferritin? Those are two others that are often notoriously low in celiacs, along with things like calcium, magnesium, copper, zinc, etc. You are lucky to have caught the low D early so you can continue to build healthy bone. Make sure your D supplement is a D3, rather than D2, and with a reading that low you would have had to do what my doctor called "fill the tank" first and then revert back to a normal supplement dose otherwise you will be continuously running on empty. Have you had your level rechecked to see if you need to up the dose of D? Your D really needs to be in the high normal range, around 80 or 90.

Yes, you do sound super sensitive and should take very strict precautions for yourself. Rosetapper gave you good advice.

Best wishes for a full recovery, and gluten avoidance

[lizzyann95]

With a low Vitamin D level and a lifelong rash that resolved on a gluten-free diet, I'm leaning towards your having actual celiac disease. Your doctor was wrong to indicate that you didn't have it, though very few doctors seem to know much about celiac. It sounds as though you are a very sensitive celiac, too, so you should definitely begin to amass pots, pans, bowls, baking sheets, and utensils for your own use. At age 17, you may be moving out soon, so it's probably a good idea to begin collecting what you need. Now that you've been gluten-free for a while, you probably cannot get an official diagnosis for celiac. However, you may be able to use these tests to convince another doctor to make the celiac diagnosis if you need something in writing for a special food plan if you go on to college.

In an article that I read a few years back about studies that were done on products manufactured in facilities where gluten-containing products are also manufactured, here is what was presented: There is a 30% chance of being glutened from a gluten-free product that is manufactured in the same facility as gluten-containing products, and there is a 70% chance of being glutened from a gluten-free product that is manufactured on the same equipment as gluten-containing products. Personally, I don't eat any such items--it's so not worth feeling ill afterwards.

You sound very well educated on the topic of celiac, and I'm proud that someone so young is addressing this matter with such maturity. You have a long, healthy life ahead of you because of the decisions you're currently making--way to go!

That's a good idea; I'll try and get my own things - I am definitely counting down the days to moving out and living in a gluten-free, safe place! haha.

Hopefully I can find a good doctor who knows about and understands all this so I can get an "official" diagnosis if needed for college! there must be some good ones out there!

That is so scary about the risks of getting glutened from facilities and equipment w/gluten on or in them! I clearly need to stop taking risks - it's definitely NOT worth it.

Aww, thank you, that made my day! I have some other, rarer diseases alongside this possible Celiac, so I've learned to research things myself rather than take what a doctor says as absolute truth!

Your IgA, while on the lowish side, is not low enough to invalidate the results. but your Gliadin IgA is a definite positive while your tTG scores are negative.. As rosetapper says, couple that with your horrendously low D, and you do sound to be celiac. Did your doctor, when doing all the vitamins, test your B12 and your iron/ferritin? Those are two others that are often notoriously low in celiacs, along with things like calcium, magnesium, copper, zinc, etc. You are lucky to have caught the low D early so you can continue to build healthy bone. Make sure your D supplement is a D3, rather than D2, and with a reading that low you would have had to do what my doctor called "fill the tank" first and then revert back to a normal supplement dose otherwise you will be continuously running on empty. Have you had your level rechecked to see if you need to up the dose of D? Your D really needs to be in the high normal range, around 80 or 90.

Yes, you do sound super sensitive and should take very strict precautions for yourself. Rosetapper gave you good advice.

Best wishes for a full recovery, and gluten avoidance

Alrighty! Thanks for your input! My vit D level was the lowest my doctor had ever seen - she was shocked! I've been on 10,000 IUs of D3 a day for about 5 months now and last month my level was up to a 74!! Thanks for letting me know about the "filling the tank" info - I think I can probably go down to a lower dosage now, but I'm still scared that it'll drop that low again! Perhaps I'll ask my doctor

Thanks so much!