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Gluten Makes Me Sick.... Need To Test For Celiac

gatheringroses

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gatheringroses Rookie
gatheringroses
Posted

Hi everyone,

So, I have a suspected case of celiac. Here are my symptoms on gluten..

- Highly sensitive: I had a strong reaction to a bit of gluten in some medication, for instance.

- L- shaped, oily poos after being glutened (sometimes, or just loose stools/water instead of stools)

- Insomnia, anxiety, depression, fatigue, joint pain, rapid eye movements and irritability.

- Flat, dry red spots appear on my skin.

- 6-month pregnant belly

- 3+ days for a recovery

I was "diagnosed" by a girl in one of my classes. (Uh, hun, you've got to stop eating gluten... No offence, look at your belly, and those red spots on your face!!). After three days of being completely gluten-free, I felt like a brand new person. What makes me think this is celiac rather than an intolerance is that I get way more sick now when I eat gluten than I did before going gluten-free (I suspect this does not happen with intolerances, but I am not sure).

The problem is, the second after she told me to stop eating gluten, and right after my "test," I immediately went gluten-free. I went to the doctor 2-3 days later to ask for tests. It was going to take awhile to organize a biopsy, so I did blood work (which came back negative).

I need to know if I have celiac or not. I suspect that I do based on what i know about symptoms of celiac vs. an intolerance (your feedback is welcome as to if this is accurate or not), but I want to know for sure.

However, I have been gluten-free since May, and I don't want to go back in time with my recovery if it is celiac.

So, I've heard of a few options for testing... the first being the biopsy. However, I'd have to destroy my digestive system, and any recovery that has taken place will be negated if I do this.

Secondly, I heard about a test for the skin lesions. However, mine only appear on my face (in clusters of 1-10), and they are flat and dry (rather than puss-filled and itchy as I heard most celiacs get).

Anyways, I really want to know, but I also don't want to eat gluten for 2-6 weeks!!

So, here are my questions:

1. Is there any chance the skin test would work?

2. Is there a stool test? (Could I eat gluten a few times, and then do a stool test?)

3. If I ate gluten for three or four days, is it more likely that I'd get a positive blood test?

Any thoughts? Any help/insight you could give me would be great. I suspect it is celiac, but my family doesn't believe me... this is important because I am worried they won't take my allergy seriously when preparing meals, but also because I think my mom has the same condition (but refuses to go gluten-free): if I were to get an affirmative diagnosis, she would be more likely to follow a gluten free diet.

Oh, also, if it makes any difference, I am in Toronto, Canada.

Thanks in advance for your insight!

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mushroom Proficient
mushroom
Posted

Hello, and welcome, gatheringroses. I love your name (but you're probably not gathering many right now :( ) I, on the other hand, have many in my garden. :)

Now to the subject at hand, testing for celiac. It is a sad truth that we often stumble upon the answer to our problems well ahead of our doctors, and try the theory to see if it works. And it does. And there is no way we want to go back to feeling the way we used to. There is an added kicker: once we have been gluten free (and it makes no difference whether you are diagnosable celiac or gluten intolerant) we react worse to gluten than we did before. This can be explained by the body being "snowed under" by gluten previously and struggling to fight it the best it can. Once it has had a chance to recover from the onslaught, your body has a whole new battallion of fresh troops to send out to fight the detested gluten, and they do a better job than those battered troops in your previously almost defenceless body.

So what to do now about getting a diagnosis. Quel embarras! Testing in the absence of gluten is useless, because the tests are looking for antibodies to gluten and the body stops making them once gluten stops coming to the party. And when the party is over the small intestine is able to stop doing its dance to the gluten music and go back to the business of healing and digesting food, so the damage that is visible on biopsy disappears too. To all intents and purposes, according to the tests, you do not have celiac. So you have to do a gluten challenge and you will read varying guesstimates about how long you need to eat gluten for this challenge. You mention eating gluten for 2-6 weeks (for biopsy, I presume, or glutening yourself up for three or four days for a blood test. I am sorry to say that neither of these have much likelihood of success. The standard advice for a gluten challenge for either testing is 2-3 months, eating the equivalent of 3-4 slicens of bread per day. Most people do not tolerate this challenge and you know all the time that you are doing damage to your body.

Now for the skin test. What you are describing does not sound like dermatitis herpetiformis. Without seeing it it is hard to say, but that is the description I would give to my early psoriasis, although their being clustered is interesting. DH is usually intensely itchy / painful at the same time, blisters and leaves scars, although there are many other types that act different. You could try to get the opinion of a dermatologist. To biopsy a DH lesion it needs to be in an active phase and the derm. must take the biopsy of the skin immediately adjacent to a lesion.

Now what you have may or may not be celiac - it may be that never-never land of gluten intolerance which even if you glutened yourself up for three months would test negative for celiac. It has been estimated that for every diagnosable celiac out there, there are five gluten intolerants walking right beside them who can (at this moment) not get a diagnosis because there has not yet been a test devised for it. It is a default diagnosis, given when a gluten free diet knocks out the symptoms, but you test negative for celiac. Nevertheless, this is better than the IBS diagnosis suh people used to get.

So now that I have given you this bundle of joyous information, feel free to fire away with any other questions that arise. :)

gatheringroses Rookie
gatheringroses
Posted
  • Author

Hello, and welcome, gatheringroses. I love your name (but you're probably not gathering many right now :( ) I, on the other hand, have many in my garden. :)

Now to the subject at hand, testing for celiac. It is a sad truth that we often stumble upon the answer to our problems well ahead of our doctors, and try the theory to see if it works. And it does. And there is no way we want to go back to feeling the way we used to. There is an added kicker: once we have been gluten free (and it makes no difference whether you are diagnosable celiac or gluten intolerant) we react worse to gluten than we did before. This can be explained by the body being "snowed under" by gluten previously and struggling to fight it the best it can. Once it has had a chance to recover from the onslaught, your body has a whole new battallion of fresh troops to send out to fight the detested gluten, and they do a better job than those battered troops in your previously almost defenceless body.

So what to do now about getting a diagnosis. Quel embarras! Testing in the absence of gluten is useless, because the tests are looking for antibodies to gluten and the body stops making them once gluten stops coming to the party. And when the party is over the small intestine is able to stop doing its dance to the gluten music and go back to the business of healing and digesting food, so the damage that is visible on biopsy disappears too. To all intents and purposes, according to the tests, you do not have celiac. So you have to do a gluten challenge and you will read varying guesstimates about how long you need to eat gluten for this challenge. You mention eating gluten for 2-6 weeks (for biopsy, I presume, or glutening yourself up for three or four days for a blood test. I am sorry to say that neither of these have much likelihood of success. The standard advice for a gluten challenge for either testing is 2-3 months, eating the equivalent of 3-4 slicens of bread per day. Most people do not tolerate this challenge and you know all the time that you are doing damage to your body.

Now for the skin test. What you are describing does not sound like dermatitis herpetiformis. Without seeing it it is hard to say, but that is the description I would give to my early psoriasis, although their being clustered is interesting. DH is usually intensely itchy / painful at the same time, blisters and leaves scars, although there are many other types that act different. You could try to get the opinion of a dermatologist. To biopsy a DH lesion it needs to be in an active phase and the derm. must take the biopsy of the skin immediately adjacent to a lesion.

Now what you have may or may not be celiac - it may be that never-never land of gluten intolerance which even if you glutened yourself up for three months would test negative for celiac. It has been estimated that for every diagnosable celiac out there, there are five gluten intolerants walking right beside them who can (at this moment) not get a diagnosis because there has not yet been a test devised for it. It is a default diagnosis, given when a gluten free diet knocks out the symptoms, but you test negative for celiac. Nevertheless, this is better than the IBS diagnosis suh people used to get.

So now that I have given you this bundle of joyous information, feel free to fire away with any other questions that arise. :)

Hey! Thanks so much for your reply. I don't think I can eat gluten for 2-3 months...! I'd be basically non-functional again.

I think I am going to gluten myself, get the face rash, and go to the doctor and see what he has to say (or, rather, ask to see a dermatologist).

As for my rash, it appears in the same place all the time within about 15 mins of finishing a gluten-containing meal. It's not terribly itchy, but it's pretty sore. It feels like extremely dry skin. The bumps are about 1 cm in diameter (sometimes smaller), and I'll get one under my eye... now, they are starting to kind of cluster on my cheeks. They're shiny-ish and red-pink. Then, this kind of really dry (subtle) white circle appears around them sometimes (it looks like flaking skin). They are pretty level with my skin, but now that I think about it, they seem a bit raised. However, I've never been able to squeeze pus out of them.... Could this be DH?

I am trying to convince my family to get tested for celiac. They know they're gluten-intolerant, but they keep eating it.... Is there any chance that gluten intolerance could have turned into Celiac from mono?

Anyways, lots of questions...! Any help/pointers you could give me would be great. =)

gatheringroses Rookie
gatheringroses
Posted
  • Author

Ok! I found someone else's post with some pictures of DH. I don't have any pronounced spots right now (they're healing from when I got horribly glutened a week ago), but I found this:

Open Original Shared Link

It looks kind of like this, but a little bit less flaky and on my face.

Could it be DH?

mushroom Proficient
mushroom
Posted

Well, yes, since those are pictures of DH. The clustering you mention is typical. You would need to find a dermatologist who is familiar with DH and how to test for it. Do you have a lesion somewhere where it would not leave a headlight scar in the middle of your face? :rolleyes: I think it would be worth a short glutening to try to get the diagnosis. I am with you on the 2-3 month challenge as not being doable.

gatheringroses Rookie
gatheringroses
Posted
  • Author

Well, yes, since those are pictures of DH. The clustering you mention is typical. You would need to find a dermatologist who is familiar with DH and how to test for it. Do you have a lesion somewhere where it would not leave a headlight scar in the middle of your face? :rolleyes: I think it would be worth a short glutening to try to get the diagnosis. I am with you on the 2-3 month challenge as not being doable.

Ok! Thanks! I am going to ask my doctor for a referral. =)

Does the testing leave a huge scar..? They're mostly on my cheeks.

mushroom Proficient
mushroom
Posted

Ok! Thanks! I am going to ask my doctor for a referral. =)

Does the testing leave a huge scar..? They're mostly on my cheeks.

I honestly don't know, not having had it done, and not knowing if they do a shave or incision :o Ask the doctor's office when you call for an appt. - of course the appt. person probably wouldn't know, but she might ask for you - or - one of our DH people might answer for you. :)

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