Newbie

[babbs]

My husband has just been diagnosed with celiac disease. He was trying to stay away from gluten for a few weeks then broke down and ate breaded fish and mac salad. He was in intense pain for 2 days and felt awful for 2 more days. Was this all due to the slip up?

Also, since our doctor has just dropped this on him and hasn't followed up, are there any long term disadvantages to staying away from the gluten?

Also, does any one know what drinks (alcohol) he can have. We found out the hard way that ceasers are out!

Thanks for any help!

Babbs

[Guest cassidy]

Yup, that pain he felt was very likely due to his slip up. It also does damage to his intestines that takes 6 months to a year to heal. Once he starts feeling better from being off gluten he probably won't want to cheat because it will make him feel so bad.

As far as alcohol is concerned, beer is out. He can have most distilled liquors such as vodka and rum. Some people don't want to drink vodka that is made from wheat. Most people say it is fine because the gluten breaks down in the distillation process. I have tried it and I was fine. You can do a search here and find all the speciality liquors that are ok. You still have to watch the mixers.

[covsooze]

The long term disadvantages are only if he does not stay away from the gluten. Sorry your dr hasn't given you much info - you'll find plenty here

There are some gluten free beers and ales now. I've not tried any yet but your hubby might want to give them a go.

Welcome to you both and all the best for this period of adjustment.

[queenofhearts]

I'm a relative newbie (about 2 months now) & I can assure you that it does get easier. It's so overwhelming & confusing at first, suddenly dealing with a restricted diet, figuring out all the hidden sources & so on, but once he finds his favorite substitutes, new recipes, safe restaurants, it starts getting less daunting, & when he starts healing he won't want to turn back!

If you can go gluten-free with him at home it will make your lives much easier, since avoiding cross-contamination is the most difficult aspect of the diet. But it is possible to be safe even in a gluten-eating household. Check out Nini's newbie kit for lots of helpful suggestions: Open Original Shared Link

Best of luck to both of you!

Leah

[babbs]

Thank you both for the info. I will definitely pass on the beer info. Is it sold in beer stores or health food stores?

[rinne]

Welcome Babbs.

Also,since our doctor has just dropped this on him and hasn't followed up, are there any long term disadvantages to staying away from the gluten?

I am new too but as far as I understand there are only "advantages" to staying gluten free, consuming any gluten at all will cause damage.

After being gluten free for nearly three weeks I had one drink of scotch because I had read that alcohol, with the distillation process was gluten free, wrong. I woke up the next day and felt like claws had seized my guts and I knew that it was the scotch. I went looking again and found that they add the mash back into some scotch and some people react. Since then I have tried potato vodka and had no reaction. I don't know about the caesar mix or clamato juice but it would seem possible that he will be able to have something like a caesar again although if he is ill right now it may be too soon.

[queenofhearts]

Thank you both for the info. I will definitely pass on the beer info. Is it sold in beer stores or health food stores?

New Grist is available at Whole Foods in my area.

Leah

[Guest southgoingzax]

Hi there,

Men in particular can be very obstinate about giving up the foods they love - I sure hope he can stay on track for both your sakes! Doctors usually know very little about celiac disease and tend to think that all you have to do is avoid gluten. They don't really bother with the practicalities. In regards to alcohol - Call your local liquor store and ask them to carry NEW GRIST, if there is no Whole Foods near you. They distribute almost everywhere. The beer is made from sorghum and rice, and, while not exactly like beer, is a close enough facsimile. You can also order Ramapo Valley on-line, although shipping is very expensive. That beer is made from molasses (and as an added bonus is Kosher and approved for Passover!). I don't like it as much as the New Grist, but mixed together with a little lime - it's not half bad. There also is Bard's Tale Beer, which is distributed over most of the east coast and midwest - they haven't made it out to me yet, sigh. Check their website for distribution areas.

Other alcohols that are okay are:

Wines

Tequila

Rum

SOME Vodkas (made from potatoes only)

I'm not sure about gins, but there may be some that are okay.

Hopefully, the painful episode your hubby had will help to remind him to stick to his diet - it's VERY important. I know lifestyle changes can be extremely difficult, so my heart goes out to both of you.

zax

[CarlaB]

Theoretically, all distilled alcohol is okay because distillation eliminates the gluten. Some of us (like me) still have problems with grain alcohols. I think in my case I probably have some kind of allergy to the grain in addition to the intolerance because I also break out in rashes if I use wheat in a lotion or shampoo.

There is no negative long-term effect of being off gluten. But the effects are serious for a celiac to consume gluten. Not only is it uncomfortable in the short-term, but it increases the risk of cancer and other health problems in the long term.

[Guest southgoingzax]

I have heard that too, that the distillation process will eliminate the gluten in grain alcohols. The problem is that many distillers add back some of the original grain mash (for flavor/body/color) afterwards. There's no way to really be sure what you're drinking hasn't had that done to it, unless you call the producer and find out. Still, it's a bigger risk than I am willing to take.

[babbs]

I hadn't thought of asking the beer store to carry New Grist. Thank you every one for your help. It is very much appreciated.

Babbs

[ms-sillyak-screwed]

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[RKB-MD]

As a physician with life long CS I'm going to wade in here.

First, hubby MUST understand that to "cheat" on his diet is asking for nothing but trouble. Life is hard enough trying to avoid the foods that surprisingly contain gluten. DO NOT knowingly eat gluten.

As I completely agree, most physicians, even G.I. specialists know little to nothing about CS, you are not going to get much help or support from your average doc.

Here is the low-down: Eat gluten and the following occurs. A CS person cannot break down the Giladin sub-protein in gluten. Giladin will destroy the microvilli on the villi in the small intestine. In addition to the direct consequences (diarrhea - referred to around these lands as "D") there are secondary consequences (this is just a short list of the major issues).

-Malnutrition: the villi absorb the nutrients from food. No microvillus, no absorption. This can lead to fatigue and lots of secondary nutrition related issues. (I could write reams about this, just understand that lack of basic nutritional substances can lead to unforeseen problems: nerve conduction, heart function, etc.)

-Small intestinal carcinoma: The microvilli are some of the most rapidly reproducing sets of cells in the body. With repeated destruction and repletion by eating gluten containing foods, one increases the risk of some of those cells “coming up bad” – ie: Cancer. Small intestinal cancer is very poorly diagnosed, and usually metastatic by the time obstruction and diagnosis occurs.

-Dermatitis Herpetiformis (DH) is a very itchy clear vesicle that ruptures easily on scratching – often found on the sides of the feet and elbows.

I agree, from personal experience, that it is a very hard lifestyle to adjust to – Krispy Kreams are delicious (why do you think there is an obesity problem?) – but he must alter his ways if he wants to stop suffering on the short term, and increasing his risks for the long term.

Please have your husband read this.