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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Help For My Husband
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IMHO. your husband is having a normal reaction to all that is happening in his body and brain chemistry.(and adjusting to being gluten free and realizing that his life--and yours--is changed) Anyone who is diagnosed with a serious disease will go through these stages.

Frankly, I threw things and screamed at the top of my lungs a few times when I was quite ill pre-DX (totally uncharacteristic for me! ) and I am not surprised to hear he is struggling. I know it is alarming, but blow it off and forgive him. If he is not normally an abusive or angry person, then you know he does not mean it. (If he gets crazy and throws things at you, of course, that is a different story--and I am sure you will not tolerate that nonsense!).

There is such a thing as gluten rage. There is such a thing as gluten withdrawal. But once he starts to heal his gut and his nervous system stops working overtime, he will not be so erratic (fingers crossed) I do not know your husband so I can't say whether this behavior is okay or not, but I know my husband and if he threw something and broke it, I would know his anger was momentary and nothing to worry about. We all have our "moments" :)

I agree with the doctor that it is going to take a long time for his system to right itself. I'm sorry, but there is no magic speed-up button for this

recovery. Resolving long term malabsorption could take a while.

Do not despair. It gets better as each month passes.

He could be moody because his vitamin D is low. I do not agree with the doctor that opening a window to the sun is going to get his vitamin D level up where it needs to be. That's insufficient. IMHO He can take 2,000 IUs

of Vitamin D3 daily (County Life makes certified gluten-free vitamins) and it will help. It may help with the depression and yes, why not call them mood swings? that's what they are. (they are not reserved for women ad little children ) :D

Have him take Culturelle Probiotics (dairy and gluten-free) and a Tablespoon of ground flaxseed meal in 16 oz. of water. That should help the constipation. Try not to give him too many laxatives/stimulants. It just creates spasms in the colon and more pain.

I feel I have to say this disclaimer every time I give this advice about correcting the bowels: I am not a doctor.

I certainly never expected to become so well-versed in poopology :lol: But I have read enough about the GI tract and what works to balance gut flora (because I had a deficiency of good gut bacteria upon DX and suffered "IBS" my entire life) and I am only suggesting what worked for me and so many others. I had the same issues your hubs is having and I can attest to the fact that it is very frustrating to feel so up and down and wonder what the hell is going on. My bowels are right as rain now and his will improve too.

Dump the soy milk, IMHO. Try So Delicious Coconut milk (red carton -dairy section) Good calcium and tastes great.

This is a long road but there is a light at the end of the tunnel (and it is not necessarily an oncoming train) :lol:Watch comedies. Take walks. Realize this is not the end of the world. Except for the inconvenience of not being able to "order in", it's not the worst autoimmune disease we could have. It's going to get better.

Hang in there. Both of you!

Looks like Gee Eff in Dee Cee and I were posting simultaneously :)

Edited by IrishHeart
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I'd say I have been through some angry depressed sad frustrated times in the last few months too.

A bit of venting sounds pretty normal. As long as it is not aimed at you, and you are not in fear. I threw some stuff too when I had the house to myself (non breakable though, didn't have the energy to clear up).

I'm not sure if I am reading it right but it sounds like both of you might have a bit of cabin fever. Getting out for walks sounds very beneficial.

I wonder if there is a local celiac group you could contact? Do you have more friends you could invite round or go to and take you own food? It is an easy does it thing but there may come a point when a bit of gentle company can help life feel a bit normal again. Maybe a movie one afternoon for the two of you.

He would of course be very welcome to come here and chat too :)

I am really glad you are coming here for support. I think lots of us become a bit self obsessed while we get to grips with diagnosis and the new way of life... ( or is that just me??)

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Hi all :) We’ve been getting out of the house a lot more lately and it’s helping us. Well, at least, it was. Over the past four days, my Husband and I have been very sick. Both of us. Same issues. BM problems, constant icky feeling in bellies, stirred up after every meal. I’ve been getting very bad gas cramping for the first time ever and several foods make me vomit.

We have a doctor’s appointment in two days to see what’s up. It shouldn’t be food -- I only buy fresh fruits, vegetables and meats, all organic, and we’re using all new cookware/plates etc. I have a new wooden butcher’s block that I use. My mother thinks we’re getting sick from the wooden block, because they harbor bacteria. I don’t really agree, I’ve always used wooden cutting boards. Cleaned with vinegar and lemon and sometimes salt.

We’re practically fighting over our bathroom, when one of us is finished, the other one is in there (sorry, graphic,). We just switch from being curled up in bed to in the bathroom. Walking makes me feel woozy and it’s a miracle I’ve been able to cook for us.

Our diet is basically all bone-broth soup right now in my feeble attempt to fix whatever I’ve messed up. I hope this is some sort of final gluten withdrawal. Shorter than usual post because I feel very ill. Not really any specific questions, I just want to know if this is normal.

On a side note, my cravings for gluten food (and gluten-free substitute baked goods) have all but diminished. And that’s a good thing. I haven’t craved brownies/cookies/bad stuff until I wrote this sentence, actually!

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Wow Katty, I'm surprised this stomach/bathroom thing is happening to you. Not surprised at your hubs --- he's the one with the dx --- but you, now that's not something that usually happens (I've never heard of it happening) with non celiacs or non celiac gluten intolerents when they remove gluten from their diet. So this leaves us with 2 possibilities..... either you both picked up some kind of bug OR surprise, surprise YOU have a problem with gluten & never knew it. There ARE such things as SILENT CELIACS who have absolutely no symptoms at all yet are most assuredly celiac. We have a few members like that. One in particular found out she was celiac only b/c her sister had problems, got tested & came up positive. It was recommended that all her immediate family members get tested. Soooo, our gal got tested --- positive blood ---- endoscopy showed total villous atrophy; WAY worse than her sister! Go figure!

Maybe someone else can come up with a reason this is happening to both of you.

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Hmmm, sounds more like a bug, especially if you both got it at the same time.

It is possible that you also have some kind of gluten issue as well though.

Glad you were both enjoying getting out, hopefully you will both be feeling better soon.

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Sorry for the GI troubles Katty. Maybe you are both fighting a winter bug? They like to kick us in the gut sometimes.

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okay, well.....I was going to suggest perhaps you guys have a flu bug of some sort, but these guys beat me to it.

Great minds thinking alike? :)

Cannot imagine you were glutened when you've been so careful.

(And not everything can be blamed on gluten as we all know.)

In any case, hydrate and stay the course and hopefully, you two will feel better soon.

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I took the same route as you - gluten free all the way. I do not allow it in my home.

Why - because gluten stole from me. Years.

And then, the oddest thing happened, and I got the biggest surprise payoff for my "sacrifice" - I got rid of my migraines, my 19 day a month chronic migraine problem - gone just like that.

Everything you describe, including your both not feeling well, sounds very, very familiar to our experience about 5 years ago.

Anyway, I have 3 suggestions.

Periodically, stop all supplements for at least a week, and add them back in slowly, one at a time.

Get some real sun. without sunscreen. every day if possible.

Read up on the Paleo diet, and not just the Cordain version. If you tell your family you're eating Paleo, they will think you are trendy, and a little less crazy. Paleos give up all grains, not just gluten, voluntarily. They are not however (due to ignorance) strictly gluten-free. The shortest possible intro to the Paleo diet here:

http://www.archevore.com/get-started/

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Hello all--not sure if the OP is still reading this, but (at risk of being very unpopular and un-trendy) I wonder if she and her husband are/were actually suffering from going TOO low-carb? From what I'm reading, while many people do really well on a paleo/Specific Carb/GAPS-type diet, apparently some people really, really DON'T do well (eg, http://www.thenourishinggourmet.com/2011/10/does-the-gaps-diet-work-well-long-term-for-everyone.html, and I'm sure there are more articles out there if you looked for them).

Maybe adding back in some safe whole grains --soaked overnight or longer before cooking, for maximum digestability --would help? We've been using this method for brown rice, http://wholehealthsource.blogspot.com/2009/04/new-way-to-soak-brown-rice.html with good results.

Just a thought...

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Hi, 

I learnt a lot from your letter. My son who is in early twentys has celiac. I would like to know if a person with celiac disease can live a long fulfilled life.

thanking you

Devaki Alahakone 

About two week ago, my Husband and I discovered he has celiac disease. We immediately changed our diet to only lean meats, fruits, vegetables, eggs and yogurt. We eat no processed gluten-free products, grains, starchy foods or anything else. We even eliminated milk.

I got rid of all of my contaminated cookware, replacing it with new stuff, and washed everything in the house. His stomach issues have gotten much better, but he’s been going through some things. I just want to make sure this is indeed normal and that I’m doing all I can to support him.

He:

  • Is always tired and can often sleep for up to 13 hours a day. If I wake him, he feels drained and grouchy.
  • Doesn’t feel full from a meal unless it has a significant amount of proteins and fats.
  • Has mood swings. He often gets angry over small things or seems to go through waves of depression.
  • Feels better one day, goes to bed and wakes up feeling worse.
  • Doesn’t want to exercise or do anything that requires exertion.
I:
  • Let him sleep when he needs it.
  • Feed him lean meats with some fats (avocado or olive oil) at every meal.
  • Plan to encourage him to start taking short walks with me to get more sunlight and light exercise.
  • Try to stay positive about everything and do my best not to agitate him when he’s feeling grouchy.
  • Eat a completely gluten-free diet with him.
Is there anything I can do to help with how tired he is? He’s taking a Men’s 1-A-Day vitamin every day, but I just ordered him a special celiac multivitamin. Is pushing him to go for walks a good thing?

I’m just looking for some guidance. I want to do everything I can to help him, and I’m trying to, but I’m just checking that none of it is actually hurting more than helping (letting him sleep, for example).

If it matters, he’s in his mid-20’s.

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Hi, 

I learnt a lot from your letter. My son who is in early twentys has celiac. I would like to know if a person with celiac disease can live a long fulfilled life.

thanking you

Devaki Alahakone 

 

This is an old thread.  In case the original poster does not respond.

 

Welcome!

 

Removing ALL gluten is essential for a person with Celiac Disease.  If your son is adhering to a gluten free diet there is every reason to believe he will live a long, healthy gluten-free life.

 

Let us know if you have any more questions.

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