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Hi everyone,

I was diagnosed with Celiac a little over a year and a half ago and then had a TTG of ">120" which was rather unspecific. After thinking I had cut out all gluten, my antibody count is still 40. I'm clearly being glutened somehow. I'm wondering if a 40 TTG is still high? I know "normal" is less than 19, but there doesn't seem to be any range online. I'm still really suffering with symptoms and was diagnosed with IBS in addition to the Celiac, but I'm kind of convinced that that's just a placating diagnosis as IBS just sort of sums up all of my symptoms, but offers no solution.

Any ideas? I'm currently on Xifaxan to kill of any possible bacterial overgrowth in my intestine. And apparently also to diminish internal hemerrhoids that I didn't know I had.

Thanks in advance for your help,

Sally

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Hi everyone,

I was diagnosed with Celiac a little over a year and a half ago and then had a TTG of ">120" which was rather unspecific. After thinking I had cut out all gluten, my antibody count is still 40. I'm clearly being glutened somehow. I'm wondering if a 40 TTG is still high? I know "normal" is less than 19, but there doesn't seem to be any range online. I'm still really suffering with symptoms and was diagnosed with IBS in addition to the Celiac, but I'm kind of convinced that that's just a placating diagnosis as IBS just sort of sums up all of my symptoms, but offers no solution.

Any ideas? I'm currently on Xifaxan to kill of any possible bacterial overgrowth in my intestine. And apparently also to diminish internal hemerrhoids that I didn't know I had.

Thanks in advance for your help,

Sally

Hi, I don't know a ton but I was just asking my GI about the Ttg numbers. This is what she said 0-3 Neg 4-10 weak positive greater than 10 positive. I was an 84 in Feb and now am a 4.

Testing at labs may have different perimeters.

Good Luck!

Wendy

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If your Ttg was given as "over 120" I guess it might mean that they stop counting at 120 and for all you know yours might have been a lot more than that. In which case it has come down quite significantly which is a good sign!

How strict are you with cross contamination and such, do you work in an environment for example where it's difficult to stay safe? maybe your antibodies just need more time to come down even more but I think it's also a good idea to re-check everything to make sure you're not accidentally getting some gluten somewhere. Especially since you still have some symptoms from time to time.

A food & symptoms diary might also be a good idea.

Pauliina

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You do need to be strict about cc. Also, I've been gluten-free fo 3 years and my tTG JUST got into the normal range, so it may take you more time. I live in a gluten-free house, never eat out, make almost all my foods from scratch and eat little to no grains. I am HYPERVIGILANT! It does take time and there is a learning curve.

Be patient and feel better!

lisa

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Thank you both for responding. I'm am neurotically-vigilant about cross-contamination. I don't share a kitchen, so that cuts out quite a lot of worry, but nonetheless, it's a concern. I very rarely eat out (even if it's from a strict gluten-free menu) because I've had trouble in the past with, presumably, CC. I've also gotten sick when staying with my parents even though we were extremely careful.

I work in an office and eat in my own office because I'm paranoid about CC. I ride public trans, so I suppose that could be it, though I wash my hands afterwards whenever I can get to a sink.

I did transfer my cat's food to a pourable canister so that I don't have to dunk my hand into a gluten-filled bag and I still wash my hands diligently after touching his food.

I've heard from nutritionists, doctors, and experts that we cannot be glutened from things like shampoo or anything getting into our pores. I am careful with toothpaste, lipstick/balms, etc., but not really any of my other personal hygiene products. Anyone think this may be the problem?

I apologize for the length of this post, I'm just frustrated and (currently) really depressed about the whole situation. Of course, if I were to go back in time to a year and a half ago, I would see my obvious improvement, but from my impatient 24-year-old mind, I feel like I'm really missing out on my "golden years" here.

Note: I see my doctor and my nutritionist in August and will present both of them with my food + symptom journal to see if they can shed any light on this.

Thanks again!

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I did transfer my cat's food to a pourable canister so that I don't have to dunk my hand into a gluten-filled bag and I still wash my hands diligently after touching his food.

I've heard from nutritionists, doctors, and experts that we cannot be glutened from things like shampoo or anything getting into our pores. I am careful with toothpaste, lipstick/balms, etc., but not really any of my other personal hygiene products. Anyone think this may be the problem?

Thanks again!

You need to find a gluten free food for your cat. Your cat eats then he washes himself. That deposits gluten residue on his coat. You then pet him and rub your eyes or put something in your mouth and you have been glutened.

The idea that we can not be glutened by things like shampoo and lotions etc is so false. You may not absorb gluten through intact skin but gluten is absorbed by mucous membranes and it also sticks to the skin. If shampoos gets in your eyes or your nose the antibody reaction will be triggered. If you are using a gluten lotion on your hands and then eat a something using those bare hands you will be glutened.

Both of these areas are issues as is the med you are taking. Did you check with the maker to be sure it is gluten-free? Your doctor would not know and almost all pharms will have to look them up. Generics are the biggest risk and need to be checked with each refill.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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You need to find a gluten free food for your cat. Your cat eats then he washes himself. That deposits gluten residue on his coat. You then pet him and rub your eyes or put something in your mouth and you have been glutened.

The idea that we can not be glutened by things like shampoo and lotions etc is so false. You may not absorb gluten through intact skin but gluten is absorbed by mucous membranes and it also sticks to the skin. If shampoos gets in your eyes or your nose the antibody reaction will be triggered. If you are using a gluten lotion on your hands and then eat a something using those bare hands you will be glutened.

Both of these areas are issues as is the med you are taking. Did you check with the maker to be sure it is gluten-free? Your doctor would not know and almost all pharms will have to look them up. Generics are the biggest risk and need to be checked with each refill.

I have not been able to find a gluten free cat food (dry food) in my area. Any tips?

And I'm so confused about this shampoo, lotions, etc. thing. My nutritionist (who is a Celiac herself--diagnosed 15 years ago) and my celiac specialist doctor both said not to worry about absorbing gluten through skin and mucous membranes. The lotion makes sense and I've wondered about that myself. Is there somewhere with FACTS? I just seem to keep going around and around in circles because it seems everyone has their own information sources and hypotheses.

Frankly, I don't think I can afford to buy gluten-free cat food (if I can in fact special order it or something from a store around me), and all gluten-free body products. It's hard enough with the food. I'm 24, living in a city, and working for a non-profit company.

I guess I'll check out my local Whole Foods tonite and see what I can find in terms of gluten-free hygiene products, but I'm going to have to see a remarkable improvement for it to be worth it, financially. Sigh.

Thank you for the information; I don't mean to sound like I don't appreciate it. I just get so much conflicting info from reliable sources.

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Okay, the latest updates are that I have finished my round of antibiotics and have been taking a daily probiotic (Align) for about two weeks.

Nothing has changed. I'm currently on day 3 of a terrible bout of intestinal gas...the very strong sulphur-smelling gas, and it's making me nauseous, exhausted, and embarrassed at work. This is just like it has been on numerous occasions in the past 2 years. About once a month (and, no, it's not menstruation time), I get really really bad daily bouts of this gas. It's much worse in the late afternoon to my bedtime. The daily gas goes on for about a week or a week and a half and then basically goes away and I feel quite a bit better. Then it comes back.

I've now taken two different rounds of antibiotics because the docs thought maybe it was bacterial overgrowth, but they haven't done anything. And I've been on probiotics, to no effect. I eat a lot of fiber and actually take Benefiber daily (the doc suggested I take it, even though there are minute amounts of gluten in it).

Anyone have any ideas? I'm kinda at the end of my rope with this stupid stomach I got! :angry:

Also, depression is a factor as of late.

Thanks,

Sally

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Have you tried eliminating the possible sources of traces of gluten that were mentioned earlier in the thread? It might be a long shot, but those bouts of gas do sound like a possible glutening to me, and until you try, you won't know if for example your cat is the source.

The thing with shampoos and lotions and so on, btw, isn't absorption through membranes but simply that it's easy for them to end up in your nose or mouth (directly, while shampooing, or indirectly, first on your hands and then to your mouth). Some people don't have problems with this, others do, so it's a personal choice. But I don't think it needs to be extremely difficult or expensive - to start with you just need to look out for wheat protein in shampoos, or wheat germ oil, sometimes barley or oats in products.

Something else - could it be instead that you react mildly to something else, like dairy? Dairy is well known for causing gas after all. Or for example I get very gassy from legumes.

I hope you find a solution eventually. :)

Pauliina

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Have you tried eliminating the possible sources of traces of gluten that were mentioned earlier in the thread? It might be a long shot, but those bouts of gas do sound like a possible glutening to me, and until you try, you won't know if for example your cat is the source.

The thing with shampoos and lotions and so on, btw, isn't absorption through membranes but simply that it's easy for them to end up in your nose or mouth (directly, while shampooing, or indirectly, first on your hands and then to your mouth). Some people don't have problems with this, others do, so it's a personal choice. But I don't think it needs to be extremely difficult or expensive - to start with you just need to look out for wheat protein in shampoos, or wheat germ oil, sometimes barley or oats in products.

Something else - could it be instead that you react mildly to something else, like dairy? Dairy is well known for causing gas after all. Or for example I get very gassy from legumes.

I hope you find a solution eventually. :)

Pauliina

Well, I switched the cat over to gluten free food (I had to special order it from the fancy pet store--though I educated the owner, so that was good) and have stopped using my lotions. I'm clearly not a very patient girl, am I? ;)

The thing that's weird is that it doesn't matter WHAT I eat, but come 2:30 or 3ish in the weekday afternoons (about half an hour after my lunch) I'm dealing with skunky gas and nausea. For about a week, then...nothing.

I've also recently cut out most dairy (with the exception of Stonyfield Farms yogurt) and stopped drinking coffee (thinking it might be an unnecessary irritant) to see if that's the case. But it's not as if I eat dairy and then feel awful. It seems to be ANY kind of food. I've done elimination diets before, but I guess it's worth another shot. I'll have a giant notepad for the doc and nutritionist next month!

Thanks for your advice (and patience!)...I just get so frustrated and whiny and I'm sure my coworkers, friends, and family don't want to hear it anymore. Hence, you lovely people do! :P

~Sally

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