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arial12bold

5 Months, 20% Improvement

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Hello,

yesterday I finished my 5th month of gluten-free/dairy-free diet and if look back I can say that I've obtained a 20-25% improvement of my symptoms (mostly GI symptoms)

I started the diet even before testing with enterolab because I started reading alot about food-intolerances and my symptoms were just the same (constipation, bloating, stomach aches, indigestion etc...)

A few weeks ago I got the enterolab results which confirmed the suspects: gluten intolerance, casein intolerance and presence of DQB1 (allele 1 and 2) genes (gluten intolerance genes)

Question 1: I was hoping to recover faster than this... 5 months are quite long and I feel like there's still a lot to do. Do you think it's "normal" ? Yeah I know, everyone is different :) I am just wondering what's the average time

Question 2: Since I am gluten-intolerant but not celiac I guess my villi shouldn't be damaged ( transglutaminase IgA = 9 units, enterolab says no damage ) So what's happening in the intestines in this case? Is it a question of inflammation etc...?

Question 3: Since I have 2 copies of the gene that predisposes to gluten sensitivity, does it mean that I've been intolerant since day one? I didn't have particular symptoms until age 17-18. From there I slowly started having various skin and GI problems. Today I am 33. Maybe that can partially explain the slower recovery??

Question 4: any tips for speeding up the process a bit? herbs? supplements? I am currently taking gluten/dairy free probiotics which helped a little. My doc said to take them for 2 months but I read it's possible to take them for longer periods, especially in particular cases like mine.

Thanks in advance :)

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Hi, and welcome to this board. Maybe you have intolerances other than gluten and dairy? Enterolab can't confirm celiac disease, only gluten intolerance. Meaning, that you may have celiac disease, but are at least gluten intolerant. It doesn't really matter, though, because the treatment is obviously the same.

And yes, since you have two gluten intolerance genes, you would have been gluten intolerant from birth. It just took quite a few years for the damage to get bad enough for you to have obvious symptoms. A lot of people with badly damaged villi have hardly any symptoms! It's not unheard of to have no obvious symptom other than for instance anemia, with your villi being completely flat.

Enzymes can help recovery, as well as glucosamine sulfate. The latter is good for joints, but also helps heal your gut.

Also, have you made sure you eliminated all gluten sources, like toasters, wooden cooking spoons, scratched non-stick cookware, wooden cutting boards, etc., as well as personal care products (many shampoos, soaps, lotions, lipsticks, etc. contain things like wheat germ or oat bran)? And many vitamins and medications have gluten, too. If you still get low levels of gluten, you wouldn't get completely better.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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Also, have you made sure you eliminated all gluten sources, like toasters, wooden cooking spoons, scratched non-stick cookware, wooden cutting boards, etc., as well as personal care products (many shampoos, soaps, lotions, lipsticks, etc. contain things like wheat germ or oat bran)? And many vitamins and medications have gluten, too. If you still get low levels of gluten, you wouldn't get completely better.

Hi, and thanks for your response.

About personal care products... I already read some stuff about it, question is... is there a way that I can discover possible traces of gluten from just the label?

Example, my wife uses an hydrating face cream which is mostly based on natural ingredients, however many of them have very "exotic" names, and I can't really say if they could be sources of gluten...

Sooo... every kiss on her cheek could be a potential killer?! :blink::) Seriously, I've got to better check.

About shampoos, could gluten be absorbed by the head skin? This one sounds new to me

Another question, what's the problem with wooden cooking spoons?

Thanks

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Did you have the soy panel done by enterolab? Soy can cause just as much trouble as gluten with the intestines. Was your fecal fat score over 300? If you eat soy try cutting it out for 2-4 weeks and see how you feel. If no different add it back in. Dairy could be another culprit, did you have the casein panel by enterolab too?


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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Did you have the soy panel done by enterolab? Soy can cause just as much trouble as gluten with the intestines. Was your fecal fat score over 300? If you eat soy try cutting it out for 2-4 weeks and see how you feel. If no different add it back in. Dairy could be another culprit, did you have the casein panel by enterolab too?

I did the test for gluten and casein. Both positive Actually, casein = 10 units... so it's borderline. I am excluding that too, I don't tolerate dairy too well.

Didn't test for soy, but yes I am staying away from it too.

It seems that people intolerant to gluten/casein also have problems with soy because it contains proteins that are similar to the gluten one

Fecal fat score was 96

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About shampoos, could gluten be absorbed by the head skin? This one sounds new to me

Another question, what's the problem with wooden cooking spoons?

Thanks

The problem with shampoo is that when you use it, it gets on your hands and if your hands touch your mouth it could cause a problem. Also, if you have long hair, your hair could touch your face or mouth, which can gluten you.

Wooden cooking spoons (and most other cooking things) usually have gluten trapped in them. And since wood absorbs alot of things, there is probably alot of gluten in it (washing it is not enough to get rid of all of the gluten). At my house, I have my own cooking utensils and pots and pans because gluten could very easily be hidden in any cooking accessory. Honestly. the only thing that I use that has been exposed to gluten is my toaster oven, but always line that with foil before I use it.

Good luck with everything and I hope you feel better soon.


Danielle

Diagnosed with Celiac 1/3/06 at age 20

Also dairy free and soy light

Guardian to 3 boys, ages 4, 3, and 2 who are gluten-free, df, corn free, and soy light

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thanks for the informations :)

Is there any particular ingredient/additive that I should look for in the shampoo label to know if it contains gluten? Or are there specific gluten-free brands?

thanks

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My mum had 6 months with only a small improvement and then finally got really serious, stopped giving the dog buscuits and taking risks ... her improvement after was much faster.

I don't know if it was once the villi are a bit better and you adsorb better nutrients it will accelerate OR cutting out possible contamination like others have said or a bit of both.

Either way ... you sound like you are doing well and things will get better.


Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

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thanks for the informations :)

Is there any particular ingredient/additive that I should look for in the shampoo label to know if it contains gluten? Or are there specific gluten-free brands?

thanks

I think the ingredients on personal care products are usually pretty obvious, like barley extract, wheat germ oil or oat bran. Somebody correct me if I'm wrong!

The brand I use is Dove shampoo and conditioner, because it doesn't have gluten or anything else I am intolerant to. And I use Ivory soap, for the same reason. But there are other brands that don't have gluten, unfortunately for me they also contain high levels of salicylates (precisely for the very reason that they're made from natural ingredients, which I can't tolerate).


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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I also use Dove brand shampoo because I know that it is gluten-free.


Danielle

Diagnosed with Celiac 1/3/06 at age 20

Also dairy free and soy light

Guardian to 3 boys, ages 4, 3, and 2 who are gluten-free, df, corn free, and soy light

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Another way your healing can be slowed a lot is if you eat out much. Even at careful places, contamination chances are quite high.

If you haven't been taking a probiotic, you should find one that's gluten-free/CF and start taking it. You could have some bacterial overgrowth.

richard

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