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passionfruit877

Question- The Difference Between Gluten Intolerance And Celiac Disease?

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Which ever one has the better clue of it really. The medical "gold standard" of celiac is done with a biopsy however and that'll be administered by a GI. Any general practice doctor, endocrinologist or gastroenterologist would be able to give a decent diagnosis or order the correct lab work/procedures if they knew enough about the condition.

Not sure which type of doctor you were referring to in your original post who was so clueless, but if you're having difficulty getting another of that same type through your insurance then try one of the other types I mentioned above. Hell technically in a few years I hope neurologists will be decent at diagnosing this as well (not holding my breath).

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From what I understand, gluten intolerance means that your body doesn't have the enzymes or whatnot for digesting - sort of like lactose intolerance- and that it isn't good for you to eat those foods. Celiac, on the other hand - is that when they can test for the specific igA in your blood to determine levels?

My situation is this - I'm overweight, have been for a while, probably PCOS. I grew up in a household where we ate no wheat, so a lot of my symptoms disappeared when I was 5, when my dad went on a wheat free diet. Before that I was thin, too thin, and had major problems with alternating diahrea etc.

So, I go to one doctor - I had tests for the antibodies done out of the country. Doctor one did a sigmoidscopy and a quick look in my esophagus (*ahem* not the right test *ahem*) and said I was fat and needed to lose weight. So, I was depressed for a bout three years, eating gluten, etc. Recently, I had a redo of the antibody test, from that they assessed that I was 90% likely to have celiac based on the bloodwork. The second opinion I got said that my intestine was sshowing some signs of damage, but not in line with a 34 year old (but she didn't know of my wheat free time, etc)... so she said, with the blood work/ my chronically low B12 and vitamin D levels, and the minimum amount of damage, she was happy to say I had celiac.

I think i was very lucky.

So, it would be up to you I think - either way, the gluten intolerance or celiac is life-long. For me i appreciated the diagnosis because now I *must* stay on gluten free diet - no more of this back and forth and wondering.

Ok, after going 5 months gluten free and having sucessful results, my doctor says I'm gluten intolerant. However, he doesn't want me to do the Celiac testing because he says I would have to eat gluten, and he told me he doesn't think I have Celiac because we would have found out before now. He told me I have IBS and that a food intolerance may be linked to that, and that my gluten intolerance should likely go away on its own it a few years. I asked him the symptoms of Celiac disease and he said, people with Celiac are short and skinny. I kind of looked at him weird because I am about 4' 11'' and weigh a whopping 100 pounds. So I figured I would just call myself gluten intolerant because I may not have Celiac disease, however, I think its entirely possible that I do. Here are my questions:

1.) Does gluten intolerance cause intestinal damage as well as Celiac disease?

2.) Do people with gluten intolerance have the same symptoms as Celiac disease, but just not the long term risk?

3.) Does gluten intolerance actually go away?

I want to understand this as much as possible.

I feel like my body has been healing since I stopped eating gluten: I am no longer constipated, my allergies are better, I have more energy, my anxiety is better, I don't have heartburn anymore, and well, I can eat again! I just want to make sure this matches with just having gluten intolerance.

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From what I understand, gluten intolerance means that your body doesn't have the enzymes or whatnot for digesting - sort of like lactose intolerance- and that it isn't good for you to eat those foods. Celiac, on the other hand - is that when they can test for the specific igA in your blood to determine levels?

Not really. In lactose intolerance you avoid dairy products because your body doesn't properly split the glucose-galactose bond and so the lactose molecule is passed further along your intestines where bacteria end up using it for fuel. In the process of the bacteria consuming lactose they emit gases which cause abdominal discomfort, bloating and gas which can be uncomfortable or perhaps slightly embarrassing however it's a problem localized completely in your intestines. With the gluten intolerance the gliadin molecules are altered by your enzymes but end up having a systemic effect on your body, not just your intestines, I think this is why some people prefer to call it gluten sensitivity over an intolerance which most often times just draws a simple parallel to other basic food intolerances like lactose.

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one book I have says that Celiac disease is gluten intolerance gone horribly wrong, so I figured if you have gluten intolerance and continue to eat gluten, you may at some point end up with Celiac disease.

I did the gluten challenge last year (painful though it was!) because is wanted the definite diagnosis. One, because my husband is a jerk and wouldn' t believe me that food made me ill, and two, because I needed to know myself. The GI had me do 8 weeks of it, but in the final 2 weeks I had to taper off because I just couldn't stomach it anymore, so to speak! I still came up with a positive blood test (at 6 weeks) and positive biopsy (at 8 weeks).

One woman I know was told by her employer that unless she had a definitive diagnosis (ie: positive blood test and biopsy) then she would not ever be granted FMLA leave if she had to take time off related to gluten sensitivity symptoms. She was unable to continue the challenge though after 3 days, (which IMO should be positive diagnosis enough!) so whenever she gets glutened and has to take a time off, she gets grief at work. This to me is just not right!

I also wanted the diagnosis because I know it is genetic, and I know my sister's children have some GI problems, her son is Aspergian with migrains, and her daughter may also be (sans migraines). Since my own positive diagnosis I've been trying to convince her to have the kids and herself tested (she's definitely vitimin deficient, but has never been tested for celiac).

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one book I have says that Celiac disease is gluten intolerance gone horribly wrong, so I figured if you have gluten intolerance and continue to eat gluten, you may at some point end up with Celiac disease.

I did the gluten challenge last year (painful though it was!) because is wanted the definite diagnosis. One, because my husband is a jerk and wouldn' t believe me that food made me ill, and two, because I needed to know myself. The GI had me do 8 weeks of it, but in the final 2 weeks I had to taper off because I just couldn't stomach it anymore, so to speak! I still came up with a positive blood test (at 6 weeks) and positive biopsy (at 8 weeks).

I like your definition. How bad was it to do the gluten challenge? I just don't know about that.

Ok, this is my plan. I'm going to do the genetic test through Prometheus labs, and see if I have the genes. If I don't, maybe I'll feel better calling myself gluten intolerant. If I do, I'll take it to my doctor and go from there. Surely they wouldn't ignore that.

PS- The ground was covered with pollen today, and my nose was fine. My husband even commented, asking how my nose was. I use to get sinus infections a lot. I used to have really bad allergies in general. I used to use that Flonase all the time. Can anyone relate? Maybe it had something to do with the gluten...

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When I did the gluten challenge I had been mostly gluten free for about 9 months or so doing the Atkins diet. Up until then, I'd been diagnosed with IBS, that never got any better no matter how much fibre I ate.

As soon as I started eating gluteny foods, I was immediately in pain, bloated, foggy brain, cranky, all over achey, gained about 10 pounds in just a few weeks, constipated and bleeding, etc etc etc...I seriously questioned my sanity putting myself through such torture, but my husband needed proof :P

I do think that nasal allergies can be made worse if your body is fighting itself with something else, such as Celiac disease. I know after I went gluten free, after a few weeks I don't seem to be as stuffed up as usual, and typical allergy tests all come up negative now. Whereas years ago I'd have welts all over me from pretty much everything they pricked me with!

I do still get stuffy in the nose, which is not allergies, according to the last allergist I saw. I tested negative for everything, so she said I just have sensitive sinuses or something. I'm really sensitive to some perfumes, colognes, and scented candles etc...I even had to return a particularly stinky gluten free shampoo and conditioner because it woke me up at night every time I rolled over and got my hair in my face. It was horribly smelly, although some people apparently quite like the scent, I had a hard time breathing around myself!

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When I did the gluten challenge I had been mostly gluten free for about 9 months or so doing the Atkins diet. Up until then, I'd been diagnosed with IBS, that never got any better no matter how much fibre I ate.

I have sort of a similar story. I was diagnosed with IBS for about 2 1/2 years. It started in college. I accepted this diagnosis at first but then it got worse and worse with new symptoms. I felt like I wasn't being taken seriously, and doctors insisted I still just wasn't getting enough fiber. I was eating fiber one bars, whole wheat everything, Activia with fiber, and I couldn't figure out how I could eat that much and still not go when people who eat fast food all the time were having no bathroom troubles. It wasn't so much constipation as I just lost the urge to go. I would have to use things like Milk of Magnesia to "stimulate" my colon every 3 or 4 days, hahaha sorry. About 2 months gluten free, it just started working again. And now I go to the bathroom regularly.

That itsself was huge proof to me that the diet was working for me, since it resolved my main symptom.

I don't know if I can handle a gluten challenge. I react to gluten in about 10 minutes. Today we went to get Mexican food and I ate a bunch of tortilla chips. After about 10 minutes the pain hit, going from just an aching stomach to cramps. I took some GlutenEase pills and the pain stopped but I am still bloated.

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It wasn't so much constipation as I just lost the urge to go. I would have to use things like Milk of Magnesia to "stimulate" my colon every 3 or 4 days, hahaha sorry. About 2 months gluten free, it just started working again. And now I go to the bathroom regularly.

Passionfruit I'm struck by your statement regarding how you lost the urge to go. I have a 7 year old who has struggled with chronic constipation and encopresis since the age of 2. Long story short her GI has spent the last 5 years telling us that it was a behavioral thing and we just needed to repotty train her. She tells me that she soils in her pants because she doesn't feel the need to go or her brain doesn't tell her it's time. She's been tested for celiac three times and biopsied once. Her first blood test showed her AGA IGG at 54 with normal <10. Biopsy was normal. GI said no celiac.

I just found out last month that my Fibro is actually gluten intolerance (stool test and diet change was positive despite negative blood tests). I'm still not convinced that she doesn't have issues with gluten. I need to have the stool test done on her. Your statement just reminds me of her.

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Passionfruit I'm struck by your statement regarding how you lost the urge to go. I have a 7 year old who has struggled with chronic constipation and encopresis since the age of 2. Long story short her GI has spent the last 5 years telling us that it was a behavioral thing and we just needed to repotty train her. She tells me that she soils in her pants because she doesn't feel the need to go or her brain doesn't tell her it's time. She's been tested for celiac three times and biopsied once. Her first blood test showed her AGA IGG at 54 with normal <10. Biopsy was normal. GI said no celiac.

I just found out last month that my Fibro is actually gluten intolerance (stool test and diet change was positive despite negative blood tests). I'm still not convinced that she doesn't have issues with gluten. I need to have the stool test done on her. Your statement just reminds me of her.

Your child sounds much wiser than her doctor. She could be having neuro impact from the celiac that is kind of short circuiting her sense that she has to go. I had that issue also but it has gotten much better gluten free.

I am glad you are planning stool testing for her and since she doesn't have to be actively eating gluten for that, as long as you are doing it soon, I would go ahead and give her a try on the diet.

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I like your definition. How bad was it to do the gluten challenge? I just don't know about that.

Ok, this is my plan. I'm going to do the genetic test through Prometheus labs, and see if I have the genes. If I don't, maybe I'll feel better calling myself gluten intolerant. If I do, I'll take it to my doctor and go from there. Surely they wouldn't ignore that.

PS- The ground was covered with pollen today, and my nose was fine. My husband even commented, asking how my nose was. I use to get sinus infections a lot. I used to have really bad allergies in general. I used to use that Flonase all the time. Can anyone relate? Maybe it had something to do with the gluten...

I hear you with regards to the seasonal allergies here! I started the gluten-free diet about 5 months ago and have seen a resolution of so many problems, including the great majority of my allergy symptoms. On a hunch, I stopped taking my nasal spray two weeks ago and I am fine. This has never happened before...and it's Spring...and the pollen is driving my co-workers nuts. Hallelujia!

With regards to genetic testing. I screwed myself for a "true" Celiac diagnosis by starting my gluten-free diet about a month before I went in for my blood testing. My results were negative for any of the blood antibodies...but after my doctor called me up and told me "Congratulations! You don't have Celiac!" I knew something still didn't jive. I did a 24 hour gluten challenge while on winter break and became EXTREMELY ill and almost had to go into the hospital because I was so sick. Based on this one day trial (and the fact that my grandfather was a diagnosed Celiac) I decided to fork over the money and give the Entero lab stool tests a shot. I tested for gluten and dairy sensitivity plus the Celiac genes.

When I received my results I showed positive IgA for BOTH gluten and casein (these did not show up on the prior blood tests. Those only showed IgG Milk, Egg, and Soy sensitivities) in addition to having positive tissue transglutaminase results which showed an active autoimmune response to gluten. Based on that and my genetic results--one gluten sensitive gene from my mom, one Celiac gene from my dad--I have decided to call myself Celiac around people who don't know that gluten intolerance can be just as serious as Celiac. BTW, when I brought the results to my doctor she still told me I didn't have Celiac because my results weren't high enough (even thoughthe Entero lab tests came back positive 3 1/2 months into my gluten-free diet) and because the antibodies didn't show up in my blood.

Looking at my health today in comparison to the hell I've been through over the past 10 years I am completely delighted with the improvements. I have been able to get off of my nasal spray and my IBS medication ( I DON'T have IBS dammit!); I have cut my depression meds in half; I have cut my heartburn medication in half and I have seen improvements in: my mood, my monthly cycle, my sleep, my body pain, my appearance...pretty much every aspect of my life. Before this diet my wife had started joking around with me and telling me that I must be a hypochondriac because I was complaining of so many problems all the time. Now she comments on how much better I'm doing and quickly supports me around others who might question my diet because she can vouch for the HUGE improvements in my quality of life since embarking on this venture.

I am so glad that you are planning to continue the gluten-free diet. Be brave and stick up for yourself. You will feel healthier and rejuvinated in the long run!

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I have been referred out to a GI specialist. I will have a new doctor so I'm excited to see how this will go.

I hope if you are still looking for a doctor derived diagnosis that you are still doing a gluten challenge. If the challenge is making you very ill then IMHO you have your answer.

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My thinking was that if a genetic test came back positive, I would get more help from my doctor.

From what I understand, the genetic test would only say if you carry the genes that make it possible for you to have celiac disease - it doesn't show that you do have, or will in the future have, celiac's. The only definite thing about the genetic testing is if it comes back negative - then that means you don't have what it takes genetically to get celiac disease. Most people who have the genes don't have celiac's. (So genetic testing can rule celiac's out, but it can't rule it in.)

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From what I understand, the genetic test would only say if you carry the genes that make it possible for you to have celiac disease - it doesn't show that you do have, or will in the future have, celiac's. The only definite thing about the genetic testing is if it comes back negative - then that means you don't have what it takes genetically to get celiac disease. Most people who have the genes don't have celiac's. (So genetic testing can rule celiac's out, but it can't rule it in.)

It can only rule it out if they check for all the genes. Many companies only test for DQ2 or DQ8 and not the other 7 associated genes. You can still be a diagnosed celiac without those 2 genes.

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Great post!

Please keep us updated!

I am in the same situation - my genetic test will be ready next week.

I wish you good luck!

:)

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I hope if you are still looking for a doctor derived diagnosis that you are still doing a gluten challenge. If the challenge is making you very ill then IMHO you have your answer.

THIS.

I tried it... for three days. That's it. It got so bad I couldn't eat, I could barely walk, and I couldn't sleep (well, not without help). If you find that going gluten-free makes you feel better, healthier, then there is your answer. It was so horrible, I just figured, why go through all that suffering if you don't have to?

Best of luck to you!

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Hi passionfruit,

I was 5'11", overweight (still am but much less so) and also diagnosed with IBS (twice). I was finally diagnosed with Celiac disease. As several of the posters have stated your doctor is stating not only old medical school training but they obviously didn't even bother to pick up any medical journals or do any reading or research at all, not even a quick perusal of the online medical journals available to them or they would never had made those statements.

I would also strongly recommend you find a new doctor. Many people here have had excellent luck with ND or MD who have a natural based practice as opposed to a pharmaceutical focused practice. And I 2nd everything Raven said. :)

By the way, I do NOT have IBS, and I do not believe gluten intolerance will 'go away'. My IBS symptoms disappeared within two weeks of going gluten-free. My central nervous system, brain, and psychological issues are taking longer but the intestinal symptoms were the first to begin healing.

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Wow...that was wierd. I didn't pick up that the OP was over a month ago. Well, hopefully passionfruit has gotten a better diagnosis. :blink:

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My doctor - the best I've ever had - described gluten intolerance and Celiac disease as points along a continuum, i.e., I may not meet the diagnostic criteria for Celiac now, but I definitely would if I kept eating gluten. And, by then, I'd be a mess. I think I'm lucky to have symptoms early on, so I can start my recovery.

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I definitely will stay with the diet. I just want to know, though, if I do have Celiac disease. I feel like knowing that would be beneficial. I'm not sure what to tell my doctor though. Did anyone have a good experience with genetic testing? I was looking at the one given by Prometheus labs. Has anyone had a good experience with them?

I realize I'm a year behind in answering, but I just joined and found this post. I just had the Genetic Test through Prometheus labs... received my results yesterday. It was super easy and really fast. It was $329.

My results came back negative. However, I'm having good results from eating gluten-free so I plan to continue since my father and my grandmother both have Celiac. I'm completing my first month of gluten-free.

www.MyCeliacID.com is the website to learn more or order your test.

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so much great info here.

I didn't realize the connection to seasonal allergies...........

always learning somehthing new.

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