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What To Do Now?

chocolatelover

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chocolatelover Contributor
chocolatelover
Posted

Just got a call from the GI and the results of the biopsy were normal. I asked how many samples he took, and she said, "Well, 4, just from the one spot". I thought they were supposed to take multiple samples from several different spots.

So, now do I do the Enterolab thing? Is it worth the money? What do y'all think? I still believe that I have the classic symptoms, but maybe I'm just barking up the wrong tree...

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MySuicidalTurtle Enthusiast
MySuicidalTurtle
Posted

Have you been gluten-free? If the diet works for you then stick with it regardless of what the test says.

chocolatelover Contributor
chocolatelover
Posted
  • Author

Have done 2 short stints of gluten-free (one was 2 weeks and one was a week). I felt better being off both gluten and dairy. Have to admit, I'm stumped.

babygirl1234 Rookie
babygirl1234
Posted

if you feel better being gluten-free then you must have celiac disease i would thing imo

UR Groovy Explorer
UR Groovy
Posted
So, now do I do the Enterolab thing? Is it worth the money? What do y'all think? I still believe that I have the classic symptoms, but maybe I'm just barking up the wrong tree...

Sorry to pop in. I just have to ask:

I see this all the time. I hope I

jnclelland Contributor
jnclelland
Posted
Have done 2 short stints of gluten-free (one was 2 weeks and one was a week). I felt better being off both gluten and dairy. Have to admit, I'm stumped.

Maybe that's your answer: if you feel better being off gluten and dairy, then don't eat them!

I also never got any official diagnosis; even Enterolab came back negative, probably because I waited too long after going gluten-free to do it. I was really frustrated about not being "official" for awhile, but eventually I came around to realizing that - for me, at least - it didn't matter. I feel better when I don't eat gluten/dariy/soy, so I don't eat them!

Jeanne

GeoffCJ Enthusiast
GeoffCJ
Posted
Sorry to pop in. I just have to ask:

I see this all the time. I hope I

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chocolatelover Contributor
chocolatelover
Posted
  • Author

I think the reason is wanting to know and understand what's going on with my body. If it just makes me feel better to avoid gluten, then I might not worry so much. If I know that eating gluten causes significant damages, then I'm not as tempted to cheat, and certainly much more careful about accidental glutenings.

I know a lot of people will think that's a silly distinction, but I simply needed to know what was wrong with me, how serious it was/is, and what to do.

Actually, Geoff, that's exactly it. Well put, and thanks.

UR Groovy Explorer
UR Groovy
Posted

Thank you, I do realize that everyone has a different set of criteria, and I suppose that it would be a little easier to turn down wheatstuffs & to what extent you need to be careful if you know for sure that you can

CarlaB Enthusiast
CarlaB
Posted

I would recommend trying the gluten-free diet anyway. If you get completely better, no need to look further. If you get somewhat better, keep eating gluten-free since you notice a difference, but keep looking for what else is wrong.

The gluten-free diet is so healthy because it eliminates most processed foods and so many foods that are bad for us, you should see improvement in your health and your cholesterol ... unless you dive into the gluten-free junk food!!

CarlaB Enthusiast
CarlaB
Posted
So, now do I do the Enterolab thing? Is it worth the money? What do y'all think? I still believe that I have the classic symptoms, but maybe I'm just barking up the wrong tree...

I used Enterolab. They were right, but they can't tell you anything you won't find out by trying the diet. Save your money.

BTW, what are your symptoms that are making you think it's celiac?

chocolatelover Contributor
chocolatelover
Posted
  • Author

Fair question, CarlaB. My symptoms include: chronic diarrhea, gas, bloating, mouth sores, fogginess, irritability, depression, lymphocytic colitis (highly associated with celiac), teeth problems, tingling in my hands and feet, floating stools (had a stool malabsorption test which came back at the very high end of normal (6.5 of 7), low cholesterol--120 (also a sign of malabsorption and celiac). My mother has all of those plus osteoperosis. Two of my children have symptoms as well. All of this combined is what brought me to the conclusion that it could be celiac, or at the very least, a gluten intolerance.

I am not sold either way...I guess I feel like if I'm going to figure this out, I might as well go all the way. Then I'll know for sure if I even have a gluten intolerance or even the genes for it. If I don't have either of those, then I know I have to look elsewhere for the cause of these symptoms, as well as my children's.

happygirl Collaborator
happygirl
Posted

chocolate lover:

I'm sorry you are having a tough time getting a diagnosis.

Yes, your doctor "should" have taken multiple biopsies from multiple sites. Rarely do they do, unfortunately.

Having the Celiac genes can tell you that Celiac might be a problem, but not having the Celiac genes doesn't mean that you don't have a non-Celiac problem with gluten. All the Celiac testing (including correct biopsies) will continuously show up nothing if you are non-Celiac gluten intolerant. Frustrating, huh? But, the treatment is the same.

In this case, the best way to know if gluten is a problem is not through testing, but doing a strict gluten free trial. You have done it already with seemingly positive results.

The other thing is that many people with a form of microscopic colitis react to various foods, one of which is often gluten....but doesn't mean that it is Celiac. Most people with MC recommend doing an elimination diet, to see which foods bother them.

Good luck and I hope your health improves. Let us know what we can do to help.

Laura

lonewolf Collaborator
lonewolf
Posted

I REALLY believe that you can have a huge problem with gluten and not be Celiac. "They" just don't have the correct tests yet. I too had MANY Celiac symptoms that vanished on the gluten-free diet. I never knew much about Celiac until I'd been wheat free, extremely gluten light for almost 10 years. I (and my doctor) wanted to know for sure if it was Celiac, so she had me do a gene test, which came back negative. So I can't possibly have Celiac.

Maybe you don't have Celiac either, but you never know what parts of your body you might be damaging. For me (like Fajitas) it was my kidneys. (BTW - a kidney biopsy is a horror compared to what I've read about an upper endoscopy and biopsy.) If you feel better off gluten, then stay off it - it's probably poisoning you in some way.

e&j0304 Enthusiast
e&j0304
Posted
I REALLY believe that you can have a huge problem with gluten and not be Celiac. "They" just don't have the correct tests yet. I too had MANY Celiac symptoms that vanished on the gluten-free diet. I never knew much about Celiac until I'd been wheat free, extremely gluten light for almost 10 years. I (and my doctor) wanted to know for sure if it was Celiac, so she had me do a gene test, which came back negative. So I can't possibly have Celiac.

Maybe you don't have Celiac either, but you never know what parts of your body you might be damaging. For me (like Fajitas) it was my kidneys. (BTW - a kidney biopsy is a horror compared to what I've read about an upper endoscopy and biopsy.) If you feel better off gluten, then stay off it - it's probably poisoning you in some way.

I absolutely agree with this. I also agree with the previous poster who said don't waste your money on Enterolab. They won't tell you anything the diet can't for much cheaper. Enterolab can supposedly diagnose a reaction to gluten but they can't diagnose celiac disease. I seriously doubt their ability to even diagnose an intolerance. My son tested negative and has obvious reactions to gluten. My friends child had a negative tTg through enterolab and tested positive for tTG through a blood test which was taken AFTER being gluten free. Also the fact that he refuses to publish really bothers me...

Anyway, it's up to you but I think that the diet is your best bet if you've had the regular medical tests run and they were negative.

Good luck

nora-n Rookie
nora-n
Posted

Lonewolf, from what I have read on other forums and here, those with DQ1 (which include subtypes 5 and 6, both are DQ1) can be even more sensitive to gluten than those with the classic genes.

I am not DQ2 or 8 either, and very sensitive.

I am in Europe, and we have this codex whet starch here, and I cannot tolerate even a speck of it, and not even citric acid which is made from wheat and malic acid, no commercial jams and jellies because of that. I am probably DQ1 or 5 or 6. They won't tell me.

nora

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