Test Result (enterolab)

[ramsfan1]

I had 23 units, which doesn't seem that high but all this means is i'm gluten intolerant, but not necessarily a Celiac? I have been Gluten free for a month with not a whole lot of results.

[CarlaB]

You're having a reaction to gluten. There may be other foods you are reacting to, like casein in dairy. I get as bad of a reaction from casein as from gluten. It also takes time to heal.

You say you still feel bad. What kind of symptoms?

[Nantzie]

As far as whether you're celiac or gluten intolerant, that's hard to know unless you've either had the genetic test done or the official doctor's tests like blood tests or biopsy.

If you're scoring anything over a 10, you need to be gluten-free. My daughter only had a 15, and was already having some problems.

When I found out that I wasn't officially celiac, but gluten intolerant, I was relieved because I figured that I probably wouldn't be as sensitive and I might not have to worry about cross-contamination.

Boy was I wrong. It turns out that I'm very sensitive and I have to be very careful about cross contamination or I get sick.

It's different for everybody though. The only way you'll know how your body is going to react is just through your own experience.

It seems to me that the difference between official celiac (positive blood tests, biopsy or DH) and gluten intolerance is very, very minimal. I believe that someday everything on the scale of gluten intolerances will be considered just one type of a group of diseases related to gluten.

Nancy

[ramsfan1]

Well i'm still getting excessive gas that kills me, but i think i might be fructose intolerant as well, so i'm gonna get tested for that and SIBO as well. Plus i havn't really thought much about cross contamination. I just got the test back today so i guess its time to take it more seriously after the results. I think i'm going to see someone that sepcializes in celiacs to help me with the process, but i doubt they'll take me seriously with an enterolab test.

[mythreesuns]

Well i'm still getting excessive gas that kills me

Milk and milk products give me horrible gas. It may be worth cutting out milk for a while to see if that helps.

[ramsfan1]

Milk and milk products give me horrible gas. It may be worth cutting out milk for a while to see if that helps.

I cut out dairy two months ago. I think the next thing for me to cut is all sugars. Only problem is im running out of things to eat and losing lots of weight.

[mythreesuns]

Only problem is im running out of things to eat and losing lots of weight.

I'm running out of things to eat too, but unfortunately I'm not losing any weight...and I NEED to lose a little weight!

I recently cut out anything processed or artificial. No more artificial sweeteners for me, no hydrogenated or hydrolyzed anything....just pure, whole food. Yum.

[bklynceliac]

i recommend Phazyme for gas. the soft gels are gluten-free and they've helped me a ton.

[CarlaB]

I would say a lot of your problems may have to do with cc since you said you hadn't been worrying about it. It's like this (sort of), if your exposed to a little of the flu or a lot of the flu, you get the flu just the same. If you're exposed to a little gluten, or a lot of gluten, you're still having the immune reaction.

Be sure you cut out all dairy, too, for at least a time. Lots of foods have hidden casein -- even non-dairy products. It may be lactose that's bothering you ... if so, you're lucky because that often goes away when you heal.

[ramsfan1]

I'm running out of things to eat too, but unfortunately I'm not losing any weight...and I NEED to lose a little weight!

I recently cut out anything processed or artificial. No more artificial sweeteners for me, no hydrogenated or hydrolyzed anything....just pure, whole food. Yum.

Yeah, i've been eating a lot of peanut butter lately even though i probably shouldn't. But i cant help it cause i'm afraid of losing more weight. I weighed 155 last semester and this semster i weigh probably 135-140. I'm 5'7(male). I should probably take some kind of supplement, but there is so much to choose from, i dont even know what i need.

I would say a lot of your problems may have to do with cc since you said you hadn't been worrying about it. It's like this (sort of), if your exposed to a little of the flu or a lot of the flu, you get the flu just the same. If you're exposed to a little gluten, or a lot of gluten, you're still having the immune reaction.

Be sure you cut out all dairy, too, for at least a time. Lots of foods have hidden casein -- even non-dairy products. It may be lactose that's bothering you ... if so, you're lucky because that often goes away when you heal.

I've been milk free for a couple of months, so i'm pretty sure thats not it, which is why i'm focusing on Fructose at the moment. I'm going to this place in Saint Louis to get the hydrogen breath test. They also have a Celiacs specialist there. Do you think i should talk to that doctor, or do you think they wont take me seriously and want more tests since enterolab did the testing?

[CarlaB]

As you heal, you will absorb more of the calories you consume. Eat a good balance of protein, fat and carbohydrates. If you're going to eat a lot of peanut butter, at least make it the natural kind without the hydrogenated oil. I've been eating a lot of natural food, too, at least 5 meals per day. To be totally honest, though, I think Ruffles helped me gain my weight back -- I was thinking that potato chips are one of the first things people avoid when trying to lose weight, so ... Now I'm only eating natural, whole, unprocessed foods.

Yeah, i've been eating a lot of peanut butter lately even though i probably shouldn't. But i cant help it cause i'm afraid of losing more weight. I weighed 155 last semester and this semster i weigh probably 135-140. I'm 5'7(male). I should probably take some kind of supplement, but there is so much to choose from, i dont even know what i need.

I've been milk free for a couple of months, so i'm pretty sure thats not it, which is why i'm focusing on Fructose at the moment. I'm going to this place in Saint Louis to get the hydrogen breath test. They also have a Celiacs specialist there. Do you think i should talk to that doctor, or do you think they wont take me seriously and want more tests since enterolab did the testing?

Casein is also in non-dairy products!

I doubt the doc will take Enterolab seriously. Whether you see him or not is up to you. I do not have a doc overseeing my diet, but I am going to a doc who also practices alternative meds to help me heal as I seem to have other issues as well as the gluten intolerance (adrenal fatigue).

[ramsfan1]

As you heal, you will absorb more of the calories you consume. Eat a good balance of protein, fat and carbohydrates. If you're going to eat a lot of peanut butter, at least make it the natural kind without the hydrogenated oil. I've been eating a lot of natural food, too, at least 5 meals per day. To be totally honest, though, I think Ruffles helped me gain my weight back -- I was thinking that potato chips are one of the first things people avoid when trying to lose weight, so ... Now I'm only eating natural, whole, unprocessed foods.

Casein is also in non-dairy products!

I doubt the doc will take Enterolab seriously. Whether you see him or not is up to you. I do not have a doc overseeing my diet, but I am going to a doc who also practices alternative meds to help me heal as I seem to have other issues as well as the gluten intolerance (adrenal fatigue).

I've completey avoided all casein. Actually i reintroduced butter back into my diet after about 6 or 7 weeks because i wasn't seeing any results. I think my next step is just to get this fructose test done and maybe SIBO, then maybe see a dietician? I'm not great at knowing what not to eat. I dont really cook unfortunately, i guess i should start. PRactically the only things i've been eating the last few weeks are chicken, green beans, potatoes, and hamburger.

[gary]

Hey ramsfan,

I don't really have a lot of advice, but i wanted to write in and get into contact with you. I'm pretty much in the exact same boat as you, it's nice to know you're not the only one going through this kind of crap. Two years ago I weighed about 150 exercised religiously and was very fit. I've been having a lot of problems, have cut out gluten and milk completely from my diet and am still having problems. I can't seem to find answers. I've never heard of being tested for fructose. So you just got tested by Enterolab? I've been trying to decide if I should because I can't seem to find answers but I recently got married and don't have insurance so it's going to cost me a ton if I do. If you don't mind I'd like to konw what your symptoms are if maybe they are like mine.

[ramsfan1]

Hey ramsfan,

I don't really have a lot of advice, but i wanted to write in and get into contact with you. I'm pretty much in the exact same boat as you, it's nice to know you're not the only one going through this kind of crap. Two years ago I weighed about 150 exercised religiously and was very fit. I've been having a lot of problems, have cut out gluten and milk completely from my diet and am still having problems. I can't seem to find answers. I've never heard of being tested for fructose. So you just got tested by Enterolab? I've been trying to decide if I should because I can't seem to find answers but I recently got married and don't have insurance so it's going to cost me a ton if I do. If you don't mind I'd like to konw what your symptoms are if maybe they are like mine.

Hey Gary, we should exchange emails or something cause it just sucks when nobody around you is like this and they cant understand what your going through.

Well to make a long story short, i had a flair up a few months ago and i had excessive gas. I have been having stomach problems for maybe 5 years or longer and was diagnosed with IBS around 4 years ago. I cant accept that and have been in so much pain that i decided to make it my mission in life to find out what is wrong with me.

Symptoms i get that are not stomach related include Eczema and Canker Sores, which i believe to be food related.

Almost all of my symptoms seemed to match up with Celiacs Disease so i cut out wheat. I also cut out all milk for a while with nothing to show for it. The next major intolerance is Fructose. You can find some information about it here Open Original Shared Link.

If your having really bad problems like me, i would take as many tests as i could and try to rule out stuff. It sucks to have to pay all that money, but in the end the statisfaction of knowing the truth is worth it. I only got the stool test which cost $99. Thats the only test you really need right not to see if you are gluten intolerant, especially since your tight on cash.

Since you already cut out gluten and milk, maybe you should go on a low carb diet and cut out all sugars. Thats the current diet i am on and i seem to be doing a little better, but way too early to tell.

What are your symptoms Gary?

You could also have SIBO, you can read up on that here Open Original Shared Link

A low carb diet will also help prevent SIBO. The test for SIBO is also a breath test.

[CarlaB]

Since you've been ill for a long time like I have, you may find you suffer from adrenal fatigue from the constant stress on your system. Google it to see if it matches up with your symptoms. It's my understanding that it's common for people who are gluten intolerant. Losing weight (and gaining weight, too) is a sign of adrenal fatigue. If your diet is gluten-free, it might help to know more about it. It's a sub-clinical condition, so docs don't really test for it, and all the changes are lifestyle and dietary.

[gary]

Sorry it's taken me so long to write back ramsfan. Well, my symptoms is the opposite of most people I don't get "D" I get constipated. But it's not just normal "C." I can't pass anything through my system sometimes because my whole insides cramp up and it literally feels like my intestines close off. Any doctor I've ever talked to says you can't go off of "feelings" but there's nothing else to explain it. At times, I'll be able to eat and pass things through and then some reaction will happen and everything seems to close off, I get horrible cramps and I can't pass things through for days and sometimes weeks. Like I said I used to work out religiously and weigh about 150 and now I'm lucky to be around 135. I have periods were I'll do well and put on a little weight but before too long I'll have a reaction or whatever it is and I will drop the weight in no time. Anyways, I've quit gluten and milk and even corn and soy now trying to find out what's going on, but so far it hasn't seemed to help a lot. I'm just praying that we will be able to find some answers and I keep searching out my options as far as what tets I can take and of course how much. Anywyas, thanks for your advice. I'm still not sure hwat to do as far as tests but I want to keep searching. Does anyone know what the odds are of a 24 year old male of getting insurance at a half way decent rate? Anyways, please keep me updated on what it is that you are trying and the results because I'm looking for jsut about anything.

[Ursa Major]

Almost all of my symptoms seemed to match up with Celiacs Disease so i cut out wheat.

I hope this is just what you did before you realized it was gluten? Because, for celiac disease you have to not just cut out wheat, but rye, barley and oats as well.

This is a long shot, but for you, and Gary, too, you might get some new insights and possibly even be helped by following the links on lectins and salicylates in my signature, and reading about those. It can't hurt, anyway.

You must be quite frustrated, but NEVER give up on finding the answers! Eventually you will get there, just be patient and keep looking.

[gary]

Hey ramsfan,

Sorry it took me so long to reply. I had posted it up before but when I came back on to look at things, my reply didn't work for some reason. Anyways, I've been having problems for about 2 years now and just like you I went from being very active and working out a lot and being 150 lbs to being lucky if I can stay around 135 lbs. When it first started for some reason every 4 months or so my system would just shut down and I couldn't pass anything through. I would call it constipation, but it didn't seem like normal "c" it was as if my system just stopped working. then before too long the bouts got worse and worse and instead of just not being able to pass things through, I would get very cramped and things inside seemed to seize up more often. The cramps at times got very bad especially if I ate anything, so I would kind of have to let it run its course and eat as much as a muffin a day or so to keep from making things worse. My doctor said just in case it was an allergy to stop eating wheat and milk, so I tried it. I didn't eat wheat however I was eating plenty of things that had gluten in it, but I was doing somewhat better for a while. Now things are pretty bad, I get cramped up with almost everything even though I'm avoiding gluten in all forms and milk and soy and corn. I've only been this strict for about 3 weeks but from the results I'm wondering if this isn't the problem after all. It seems like your on top of things as far as being tested for possible solutions. If you have any suggestions they would be very appreciated.

Thanks,

Gary

[ramsfan1]

Gary, it seems like you have tried many things.

I went to the doctor and told him about enterolab and he basically laughed at me. Anyway, he scheduled me a colonoscopy and an endoscopy the same day. Shoud i be worried about this? He said the endoscopy would check for celiac and Crohns. Have you had a colonoscopy or endoscopy done Gary?

[Mayflowers]

I doubt the doc will take Enterolab seriously. Whether you see him or not is up to you. I do not have a doc overseeing my diet, but I am going to a doc who also practices alternative meds to help me heal as I seem to have other issues as well as the gluten intolerance (adrenal fatigue).

I told my boss who is a Pediatrician about the Enterolab test and he was impressed. I don't see why a doctor wouldn't take it seriously, it's an accredited lab run by MD's.

I'm having the opposite problem. I'm having a hard time losing weight. I need to lose it. I did however break my ankle in June and I'm just the last 2 -3 weeks walking, with a cane with difficulty.

Eat a lot of gluten free snacks, that's how I gained, gluten-free cookies, brownies, breads, crackers..nothing like a lot of carbs to put weight on.

[ramsfan1]

I told my boss who is a Pediatrician about the Enterolab test and he was impressed. I don't see why a doctor wouldn't take it seriously, it's an accredited lab run by MD's.

I'm having the opposite problem. I'm having a hard time losing weight. I need to lose it. I did however break my ankle in June and I'm just the last 2 -3 weeks walking, with a cane with difficulty.

Eat a lot of gluten free snacks, that's how I gained, gluten-free cookies, brownies, breads, crackers..nothing like a lot of carbs to put weight on.

I'm so confused. I dont know if i should cancel the tests or not. I mean if it for sure wasn't dangerous, i wouldn't have a problem with it. I really only went to him to get the SIBO or fructose test, but he told me we'll worry about that after he can rule out other problems first.

[Mayflowers]

I'm so confused. I dont know if i should cancel the tests or not. I mean if it for sure wasn't dangerous, i wouldn't have a problem with it. I really only went to him to get the SIBO or fructose test, but he told me we'll worry about that after he can rule out other problems first.

An official diagnosis only gets you turned down for health insurance. Besides, what if they biopsy a part of your intestine that's not damaged? You'll get a false negitive.

If you can go gluten free and you feel better, you know then what the problem is. I just noticed another perk yesterday. I can fit into pants I couldn't before. My body was more "swollen" eating gluten. Now I weigh more but I can fit into pants I couldn't before..

You can also get the A. L. C. A. T. test done for other food intolerances and allergies which would help.

[ramsfan1]

Well its been 4 months and I want to give an update of how things are going. I did end up getting the endoscopy and the blood test for Celiacs disease and they both came back negative. I was ,however, gluten free for a few weeks or longer(dont remember) before taking the tests. I decided to stay on a gluten free diet any way, and have been gluten free for probably around 5 months. I have not gotten any better, and I have the same symptoms. I then read that Celiacs Disease can also cause SIBO, so tomorrow I am being tested for SIBO. I don't truly know if I have celiacs disease or not, but I just have a gut feeling bad bacteria is involved.

[AndreaB]

According to Enterolab if you tested positive with them you need to remain gluten free. If you don't feel any better at all then something else is also going on. After you check for SIBO have you looked at other intolerances, candida etc.