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How Reliable Was This Test In My Path Towards Diagnosis?

S0undw4v3

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S0undw4v3 Newbie
S0undw4v3
Posted

Hello all,

I'm new to the site and I have a question.

I recently took the A.L.C.A.T test to determine if I have a gluten intolerance/Celiac disease or not.

I got my test back and it shows that I have a severe reaction to Gluten and a moderate reaction to Gliadin.

So my question is, is the test reliable enough to accept my diagnosis and abandon all gluten or should I retest through Enterolab?

I tested negative on some regular bloodwork my Doc did a while back ago which is why I took the A.L.C.A.T test. I also read that the regular blood test can yield false negatives.

I've yet to do a biopsy and the Enterolab because 1 I don't want a biopsy done cause I'm a wuss and 2 I got a positive on A.L.C.A.T.

Thank you for your assistance!

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mushroom Proficient
mushroom
Posted

I'm sorry not to be familiar with the A.L.C.A.T. test so can offer no opinion. Are you still eating gluten or are you mostly gluten free? Any recommendations would depend on that.

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WheatChef Apprentice
WheatChef
Posted

I tried posting a link to the site and got this message on my link "The (Company Name Removed - They Spammed This Forum and are Banned) test". Instead I removed the link since it doesn't look like the best idea to link to them. Reading up about it, the most I could find was a whole bunch of unpublished papers that they were citing as proof that their method works. It appears to be mainly a european thing (machine not approved for sale in US) so that makes getting info a bit difficult as well.

The whole severe reaction to gluten and moderate to gliadin thing is somewhat odd. Gliadin is gluten although gluten isn't necessarily gliadin (think square/rectangle). The other potential compound that gluten can refer to, glutenin, isn't toxic to us.

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ravenwoodglass Mentor
ravenwoodglass
Posted

Have you had your doctor run a celiac panel? That would be a good idea to have done. While we do have many false negatives that should always be a first step. You could also do Enterolab although Enterolab does not diagnose celiac. You also have the choice of just going with the strong positive on the test you did if that is enough to keep you strict with the diet. However if you are going to go gluten free with just those results and decide later you want a doctor derived diagnosis you will need to go back on glutn for a few months first.

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cassP Contributor
cassP
Posted

i believe the (Company Name Removed - They Spammed This Forum and are Banned) is just for allergies or i guess you could say intolerances- but it in no way addresses the Celiac antibodies. a girl i follow on twitter- she did the (Company Name Removed - They Spammed This Forum and are Banned) because she was so miserable- and it DID show her many foods that she was allergic to that helped her a lot-

but she also did the gene test thru ENTEROLAB, and blood tests thru her doc to address Celiac.

there's no need to be afraid of the endoscopy & biopsy- they put you under "twilight" and it's a breeze i am told (at least my colonoscopy procedure was a breeze)

you just have to figure out when & if you're doing it- and then get back on gluten to have an accurate test- otherwise you're just wasting your time and money. my doc had only put me on a 2 week wheat challenge- but others on here suggest 6 weeks to 2 months.

if you're not too sick i would get back on the gluten & ask your GI for a complete blood panel & endoscopy/biopsy

(ps-oh wow, i didnt know the company was banned- weird i couldnt type it- hope my above post makes sense)

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Skylark Collaborator
Skylark
Posted

None of the tests mentioned in this thread are diagnostic. AL CAT claims to test allergies and would not be measuring celiac antibodies. Whether they are actually measuring anything meaningful is a subject of debate.

Enterolab is not diagnostic either. It's interesting information, but that's about it. Like AL CAT, there is no published work on it, and the data on the website suggests that the test is too sensitive.

If gluten makes you sick, you should abandon it. If you are unwilling to do so without a "diagnosis" you will have to do the biopsy.

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S0undw4v3 Newbie
S0undw4v3
  • Author
Posted

Thanks for the excellent replies guys.

My doc ran a celiac panel and it came back negative. I had been gluten free for about 1 - 2 months before I got the panel done. He did check me for a couple of vitamin intolerances and the only one that came back that I was severly dificient in was vit D. It was also the only fat soluble vitamin he checked for, so either I'm deficient from living in a cave/home or I just can't absorb it because its fat soluble. I'm really skinny and cannot gain any weight whatsoever no matter how much I eat or what I eat. I've gone back and forth with the gluten free diet and I do feel slightly better although it takes a while to kick in. At one point while being gluten free for a while I gained a bit of weight but then lost it again because I believe I was not adhering to a complete gluten free diet. I believe this was because I would go to restaurants and assume that something was gluten free based off the item. Not sure though!

I've had a lot of weird symptoms throughout my life and I would say that some are resolved by not eating gluten. At the moment I've been gluten free for about a month. My girlfriend says the biggest differance is my personality. On gluten I have a lot of mood swings according to her and when I'm gluten free she says I'm a lot more calmer and more open to talking to people and socializing.

I miss gluten food and really want a diagnosis, but I hate that according to you guys the only absolute way is to do a biopsy. I mean, I could stay gluten-free and see if I gain weight and all my symptoms start going away as well.

Any advice would be appreciated! Thanks! :)

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WheatChef Apprentice
WheatChef
Posted

Woah, woah woah... If you look closer you'll find a very large amount of people on here who have little to no respect either for the biopsy test. Really, the best test is how you feel while on gluten vs off gluten.

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ravenwoodglass Mentor
ravenwoodglass
Posted

Thanks for the excellent replies guys.

My doc ran a celiac panel and it came back negative. I had been gluten free for about 1 - 2 months before I got the panel done. He did check me for a couple of vitamin intolerances and the only one that came back that I was severly dificient in was vit D. It was also the only fat soluble vitamin he checked for, so either I'm deficient from living in a cave/home or I just can't absorb it because its fat soluble. I'm really skinny and cannot gain any weight whatsoever no matter how much I eat or what I eat. I've gone back and forth with the gluten free diet and I do feel slightly better although it takes a while to kick in. At one point while being gluten free for a while I gained a bit of weight but then lost it again because I believe I was not adhering to a complete gluten free diet. I believe this was because I would go to restaurants and assume that something was gluten free based off the item. Not sure though!

I've had a lot of weird symptoms throughout my life and I would say that some are resolved by not eating gluten. At the moment I've been gluten free for about a month. My girlfriend says the biggest differance is my personality. On gluten I have a lot of mood swings according to her and when I'm gluten free she says I'm a lot more calmer and more open to talking to people and socializing.

I miss gluten food and really want a diagnosis, but I hate that according to you guys the only absolute way is to do a biopsy. I mean, I could stay gluten-free and see if I gain weight and all my symptoms start going away as well.

Any advice would be appreciated! Thanks! :)

False negatives on both blood and biopsy are not uncommon. The advice here is to do the diet after testing no matter what the results of the tests. You are having good results from the diet. That is the best 'test' there is. Many of us have mood changes on gluten, that is a sign of brain impact. IMHO you would be wise to stop going on and off the diet and just stay on it. If you feel you have to have a doctor derived diagnosis then get back on gluten for a couple of months and go get tested but be aware that you may very well have a false negative. If the diet works I would stick with it.

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mushroom Proficient
mushroom
Posted

Thanks for the excellent replies guys.

My doc ran a celiac panel and it came back negative. I had been gluten free for about 1 - 2 months before I got the panel done. He did check me for a couple of vitamin intolerances and the only one that came back that I was severly dificient in was vit D.

Any advice would be appreciated! Thanks! :)

A celiac panel run on a gluten-free person should be negative anyway. The tests check for gluten antibodies, and if you are not consuming gluten the antibodies should not be there. That is part of our problem with doctors - so many do not know how quickly the antibodies can disappear. Not to say necessarily that the test would be positive on gluten, as Ravenwoodglass says, or the biopsy for that matter. I didn't even bother with the tests because it was clear I had a problem with gluten.

Vitamin D deficiency (and later osteoporosis) is one of the most common side effects of gluten intolerance/celiac.

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S0undw4v3 Newbie
S0undw4v3
  • Author
Posted

Great replies as usual guys. Everyone on this site is very helpful and I really appreciate it.

Is it possible to always be congested if one is gluten intolerant or celiac? I've been permanently congested for like 5 years... Its hell.

I'll stay gluten free and see what happens. It's really tough sometimes... But we'll see what comes from it after adhering to the diet for at least a year. I was a vegeterian for a year, how much harder could it be? :'(

Oddly enough, avoiding gluten and all I ate this gluten free bread, or at least I think it was a gluten free bread I ate, that gave me a pretty severe allergic reaction with hives and D. It is probably a specific ingredient in the bread, although I ate a few other things as well.

Guys got any advice for figuring out what could have given me this reaction?

Thanks!

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ravenwoodglass Mentor
ravenwoodglass
Posted

Great replies as usual guys. Everyone on this site is very helpful and I really appreciate it.

Is it possible to always be congested if one is gluten intolerant or celiac? I've been permanently congested for like 5 years... Its hell.

I'll stay gluten free and see what happens. It's really tough sometimes... But we'll see what comes from it after adhering to the diet for at least a year. I was a vegeterian for a year, how much harder could it be? :'(

Oddly enough, avoiding gluten and all I ate this gluten free bread, or at least I think it was a gluten free bread I ate, that gave me a pretty severe allergic reaction with hives and D. It is probably a specific ingredient in the bread, although I ate a few other things as well.

Guys got any advice for figuring out what could have given me this reaction?

Thanks!

What was the bread? It is possible you are allergic to something in it.

Your congestion could be part of your symptoms. Time will tell as you get farther on in the diet.

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cassP Contributor
cassP
Posted

dairy sometimes congests me- and sometimes if my stomach isnt digesting too well- i'll get an allergy attack...

BUT when i was regularly consuming wheat years ago- i had post nasal drip NONSTOP!!!! it was ridiculous

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S0undw4v3 Newbie
S0undw4v3
  • Author
Posted

What was the bread? It is possible you are allergic to something in it.

Your congestion could be part of your symptoms. Time will tell as you get farther on in the diet.

I ate a couple of things. gluten-free sopressata which has never given me a reaction. 3 Egg whites and 1 yolk, and as far as I know I've never had any issues with eggs. This gluten free frozen egg meal which didn't really have anything that I've reacted to that I know of, although it did list "spices" and I could maybe be sensitive to a spice? It's the only thing really new I've introduced to my diet. Also had A LOT (8 slices) of Rudi's gluten free bread. Quite a few ingredients in it so I could be sensitive to one of them specifically.

Really tough to figure out honestly. I'll avoid the bread and see if it happens again. The other day I got bad cramps with no D nor hives, but it was pretty bad cramping. Like rip my eyes out bad lol. I was eating a lot of that bread as well. Maybe I'll go back to Udi's and see if it happens with that one.

Also, good to see I'm not the only one that suffers from nasal issues.

You guys are great! :D

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