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Help For My Husband
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36 posts in this topic

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.

Edited by Katty
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Hello, and welcome.

It sure sounds like you are doing your part in supporting his recovery. What he is going through is not abnormal. Recovery is not a straight line on a graph, there will be good days and bad days. He has a lot of healing to do from the damage that has been done. He is also most likely going through a withdrawal process (gluten acts as an opiod and can be just like nicotine or heroine in the withdrwal process), So cut him some slack on the grouchiness :) Fatigue is common so do let him rest as much as possible. He has been starved of nutrients because celiac is a disease of malabsorption, so when you are in recovery you must eat what your body tells you it needs. Good fats, like butter, olive oil, nuts, avocados, eggs, are all to the encouraged, as are proteins.

I would encourage him to have his nutrient levels checked by his PCP, vitamins and minerals, the most crucial being the B's (particularly B 6 and B12, Vit D., ferritin/iron, potassium, magnesium, zinc, copper, and also a thyroid test (not just TSH but also TPO antibodies). These are all things celiacs tend to be deficient in and the typical supplements are not enough, sometimes you need prescription strength. I still take Rx Vit.D and B12 injections (I could not handle the sublingual that most people do). I was also deficient in folate (B6) and was hypothyroid.

Yes, walking is the best exercise to start off with, and the fact that you can do it together is even better. When he no longer needs the sleep he will probablly stop sleeping so much. Remember, this is a healing process he is going through, and just like healing from anything else it takes time. You cannot just turn off the gluten faucet and be well. :)

Do stay in touch and ask any more quetions as they arise.

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Ha ha! It appears that I was posting at the same time as Mushroom, and our responses contain almost the same information! Anyway, here's what I had to say:

It sounds as though he needs to be tested for his nutrient levels--he may need more than what a multivitamin has to offer. It's common to suffer from either iron anemia or Vitamin B12 deficiency as well as deficiencies in Vitamin D, magnesium, Vitamin K, and B vitamins, in general. He should also get his thyroid tested, because Hashimoto's Thyroiditis is common in people who have celiac. Otherwise, it sounds as though you're doing everything right. Yes, he should get as much natural sunlight as possible. If his muscles are tired or if his joints are bothering him, you may need to have him take some chelated manganese.

You're doing an excellent job--I wish I had someone just as great to take care of me!

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Great advice, you sound like the most amazing supportive and clued in person.

The only thing I would add is to take care of yourself too :)

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Well, I was going to say just about everything these three wise women said, so I'll just say...you are doing everything you can and you are an amazing supportive spouse! Having one of my own has been an enormous help--I do not think I could have recovered as well without him. He's been a rock.

I echo having his Vitamin B-12, FOLATE (B9), B6 (pyridoxine), ferritin levels and Vit D levels checked.

They are often low as a result of malabsoprtion and may need supplementing. I was really flagging when I found I had deficiencies in all of those and appropriate supplementing helped me out. I think a good probiotic may help with gut repair, too.

Both of you ---just hang in there.

Please, tell your hubs that it does take time to see progress, but it does get better. :)

Best wishes!

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Thank you all for your wonderful advice. I’ll take him to get his vitamin levels and thyroid tested ASAP. I’m fairly certain he has a vitamin D deficiency and I’m sure it’ll get worse now that we cut out fortified milk. (He seemed to be slightly lactose intolerant.) I’m so glad everything he’s going through is normal. Our doctor admits that he doesn’t know enough about celiac and essentially sent us packing with a “stay away from gluten” recommendation.

I have some questions about the few things our doctor did recommend:

  • The doctor did say dark chocolate will help him heal. Is there any truth to this? Sounds odd to me, but hey, if he needs chocolate I’m more than willing to keep us stocked.
  • The Doctor also said to give him lots of coffee. This sounds odd to me, is it beneficial? I love coffee, but he doesn’t really like it.
  • The doctor said beans are bad for him. Why is that?

I try to get one good fat and one good protein in every meal. I start his days with yogurt to get him probiotics, actually. Usually yogurt, fruit and some nuts. I don’t mind since I love cooking for us. Thanksgiving was rough, but we managed to get through without a gluten incident. I brought our own food to our family’s dinner, which was awkward but relieved a lot of stress for us.

It seems to be more than a gluten withdrawal, I think we both got that pretty early. He started feeling better. He had more energy and was happier. Following that came his grouchiness and fatigue. I don’t get down on him with his grouchiness. Don’t get me wrong, it’s a little rough, but I just remind myself that he’s healing and change the subject.

I’m just grateful that we’re no longer damaging his body with gluten. I baked bread/served pasta on a daily basis prior to finding out. I gave away pounds upon pounds of whole wheat flour (Now, the very thought of feeding him whole wheat bread makes me cringe.)

Anyway, thank you all again for putting my mind at ease. I’m trying to support him every step of the way and want him to heal as fast and thoroughly as possible. Since I’m already the primary cook, I get to introduce us to new things and I’m trying to make this fun. From my understanding, I basically shifted us to a paleo diet.

(One thing I’m not complaining about is that I'm dropping pounds! I was on the “last 10” and now those “last 10” are gone thanks to going gluten-free! I also seem to have more energy.)

Edited by Katty
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Boy Katty, you are the model spouse of a celiac! Kudos to YOU! The others were spot on with their advice.

Based on your last posting I will add that gluten withdrawal can take some time & it can seem gone & then it comes back ~~~ another good days, bad days kind of thing. The first 6 months, at least, of gluten free can be wonky so just try to roll with the punches as you have been doing. He will have advances & set backs. What seems like great healing followed by regression --- up & down.

I will stress that it seems most of us need LOTS of protein & especially in the mornings. I am 1 year gluten free & still find myself needing gobs of protein in the morning. Sort of like turning your meals upside down ~~~ dinner for breakfast & breakfast for dinner.

You did perfect at Thanksgiving! Eliminating the stress is half the battle.

You can give him fortified orange juice to help with the D. When we have celiac disease the villi become blunted (or worse) & the tips of the villi are what dealt with lactose (dairy) but they aren't there anymore so diary is difficult or impossible to tolerate & that can include yogurt so watch for that. Culturelle makes a gluten free, non dairy probiotic capsule if he should need it.

The doc provably said the dark chocolate for the antioxidant factor but check as even dark chocolate can contain dairy.

I have no idea why he said coffee. If your hubs isn't into coffee then I see no real reason for him to force himself to drink it unless someone can come on here & tell us both why he should.

Beans are only bad for him if they cause him gastric distress. Again, I don't know where the doc was coming from with that one.

It's fantastic that you are a baker & seem to love cooking in general. You will transition easily to baking gluten free breads & goodies! :)

Welcome to the board!

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...

I have some questions about the few things our doctor did recommend:

  • The doctor did say dark chocolate will help him heal. Is there any truth to this? Sounds odd to me, but hey, if he needs chocolate I’m more than willing to keep us stocked.
  • The Doctor also said to give him lots of coffee. This sounds odd to me, is it beneficial? I love coffee, but he doesn’t really like it.
  • The doctor said beans are bad for him. Why is that?

...

(One thing I’m not complaining about is that I'm dropping pounds! I was on the “last 10” and now those “last 10” are gone thanks to going gluten-free! I also seem to have more energy.)

Hi Katty,

Chocolate

Not sure on the chocolate thing. Most chocolate has soy in it and dairy. But dark chocolates are sometimes soy / dairy free, so he may have been thinking of that.

Caffeine

I don't think lots of coffee/caffeine is beneficial myself, expecially if he doesn't like it much. Iahd to quit coffee and caffeine for a number of years myself, as it caused large swings in my energy / fatigue levels and was not a stablizing effect on my health. NOw I can drinnk black tea but it was years after gong gluten-free thing to get to that point. And eliminating several other food intolerances that popped up and caused their own symptoms.

Beans

Beans can cause gas for most people. That may be what he is thinking of. When your gut is inflammed and irritated gas can cause quite a bit of pain. Beans can also have high lectins and some of us react to them. I stopped eating beans for several years but can eat them again now. Well, some of them anyway. but everyone is unique in the foods they react to, and he may have no problem at all with beans.

I mostly take vitamins as individual items, like a B-complex, or calcium and magnesiusm, instead ot the kitchen sink variety. The kitchen sink fixes everything for you pills often caused me digestion problems, and reactions. I do take a multi-mineral tho.

Hubby may be grouchy because he is in pain, but doesn't realize it. The small intestine is around 22 feet long, and wraps back and forth in the abdomen. So pain can be spread over a fairly large area and not localized to a specific spot. Imagine a 22 foot long scraped knee that doens't stop hurting in a few minutes or days even. The inflammation can cause constipation as well as diahrea. The probitoics can help with replenishing helpful bacteria in the gut, which get out of balance with bad bacteria at times.

Some of the more common food intolerances people report here are soy, nightshades, corn, dairy, eggs, oats all in addition to gluten, (wheat, rye and barley). Sometiems tehse additional food intolerances go away after a while on the gluten-free diet tho. Sometimes not. Everybody seems to have their own unique combo of them, and some people have none. It is just something to be aware of as a possibility.

It sounds like you are doing a really good job of going gluten-free! :D That's great. You are already doing most of these tips I think.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Get your vitamin/mineral levels tested also.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

Helpful threads:

FAQ Celiac com

http://www.celiac.co...celiac-disease/

Newbie Info 101

http://www.celiac.co...ewbie-info-101/

What's For Breakfast Today?

http://www.celiac.co...reakfast-today/

What Did You Have For Lunch Today?

http://www.celiac.co...or-lunch-today/

What Are You Cooking Tonight?

http://www.celiac.co...ooking-tonight/

Dessert thread

http://www.celiac.co...399#entry802399

Easy yummy bread in minutes

http://www.celiac.co...ead-in-minutes/

How bad is cheating?

http://www.celiac.co...t-periodically/

Short temper thread

http://www.celiac.co...per-depression/

Non-celiac wheat sensitivity article

http://www.celiac.co...ists/Page1.html

Thread For gluten-free, Dairy, Soy, Corn And Nightshade Free Recipes

http://www.celiac.co...e-free-recipes/

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Just a small addition: If your husband ends up needing to take Vitamin D, our ability to absorb it can be challenging. What was recommended at a recent celiac conference is to take Country Life Natural Vitamin D because it also contains Vitamin A and medium-chain triglycerides. You see, each of our cells has two A receptors for every D receptor, so taking only Vitamin D makes no sense. Also the medium-chain triglycerides will help your husband absorb the Vitamin D. I took 50,000 iu's of Vitamin D daily for a year and saw no improvement in my level; however, after only a few months on 400 iu's of Vitamin D in Country Life Natural Vitamin D, my Vitamin D level is the highest it's been in my entire life (I was born with Rickets). It's over 60! This is amazing to me and proves that the information I received at the conference was correct. Hope this helps....

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I didn’t even think of the beans causing gas, that must be the reasoning. I soak beans overnight to remove the gas-causing compounds, so I think we’ll give them a shot. They’d really make our diet more cost-effective.

I’ll look at piecing together an individual spread of vitamins once we get the results back on his vitamin levels. The Vitamin D from Country Life Natural sounds great and I have a feeling I’ll be driving to the local vitamin cottage to get some.

The pain sounds awful and I’m sure it contributes to his moods.

We’re watching for additional intolerances as our diet develops. It only took one time of him eating potatoes for it to be clear he shouldn’t be eating them. The same goes for soy, dairy, oats and whole grains in general. Eggs and tomatoes seem to be fine for him, as does yogurt oddly enough. The company says it’s safe for celiac because the beneficial bacteria breaks down the gluten on its own.

Thanks for all of the tips and links. I went through and bookmarked each one and I’ll read through them when I have time over the next few days.

It was really a shock for me when my Doctor recommended marriage counseling for us to deal with celiac. When I declined, the nurse told me that many spouses continue to eat gluten (and I’ve read plenty about that) but I just can’t fathom doing so myself. I refuse to eat gluten even when we’re apart, let alone in our home, and I hold nothing against him. It’s a blessing in its own right, forcing us to eat healthy and all of that. Plus, I’m happy that he doesn’t have something worse. The doctor dropped the words “colon cancer” and had me panicked for what felt like forever.

Since our doctor doesn’t seem to know enough about celiac, I’m considering finding a specialist in my area. My Husband would prefer just to listen to his body and not spend the extra money, though. We’ll see, I suppose.

I don’t know about fortified orange juice, though. I think I’ll buy vitamin D supplements and skip anything that comes in a package. Even orange juice. I’m verging on paranoid with our food and would be nervous giving him processed orange juice. Just like I don’t plan on doing gluten-free baking unless he requests it down the line. If I do, I’ll buy gluten testing kits to check each flour/ingredient to put my mind at rest.

I have one more question (I’m sure one of many, really. You’re all so wonderfully helpful. :))

Does anyone have a hard time with car rides? He can never get in a car without the sudden urge to have a BM, even if he just had one before leaving the house. His stomach cramps and he says it’s immensely uncomfortable. This causes massive anxiety for him when we need to travel. It started years ago, before I knew him, when his stomach problems began (what we now believe to be the onset of celiac for him).

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Hmmm....your last posting posed an interesting question. The only response I have is that gluten is considered a neurotoxin to people with celiac. It can cause all kinds of neurological damage and conditions. If he's always had a problem with diarrhea, I can understand how he may have developed anxiety about going on car rides. Anxiety in itself is a common symptom in people with celiac, as is depression. Over time, his diarrhea should lessen--it took me 18 months, however, to completely resolve the bathroom issues. A product that I would highly recommend is Metagenics UltraClear Sustain Medical Food, which was recommended to me by an integrated medicine doctor (who is also an internist). He told me that if I added only one scoop to my smoothie every day, I would feel as though I didn't even have celiac. He was right! Within two weeks, the diarrhea and cramping completely went away, and I wished that I'd known about this product earlier. Also, in the interim, if your husband continues to be challenged with car rides, would he be willing to take some Immodium D to help him get through them? I use it when I'm fearful of such episodes myself. His mind needs to retrain his body, and once he has a number of successful car rides, his mind may believe that all is well.

There is a quote from James Allen that I keep taped to my hard drive (because I have Stage IV cancer and try to meditate daily to heal myself), which may help him: "The body is the servant of the mind. It obeys the operations of the mind, whether they be deliberately chosen or automatically expressed. All bidding of unlawful thoughts the body sinks rapidly into disease and decay; at the command of glad and beautiful thoughts, it becomes clothed with youthfulness and beauty."

And, no, in case you're worried, my cancer is not colon cancer....however, I do believe that celiac is the root cause of my cancer due to nutritional deficiencies I suffered throughout my lifetime. Your husband is still young--as long as he follows a gluten-free diet, he should be fine and enjoy a long and healthy life. He is SO fortunate to have you!

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Hi Katty,

There are celiac support groups in many areas. They generally have meetings for new people and members once in a while. Some hospitals also sponsor support groups. Support groups are a great way to meet other people with celiac and also learn about good doctors and places to eat etc.

http://www.celiac.co...ons-&-Contacts/

Don't worry about reading all of those threads right away., The meal idea threads are just for that, ideas of things to eat. They tend to get a little long after a while.

Soaking the beans is supposed to help. Actually, it is a good idea to wash and rinse any beans or grains before cooking them. Expecially quinoa if you decide to try that. Qunoa is very nutritious but has a natural film on the grains/seeds that can make people sick. It can be washed off with plain water though.

You might want to avoid nuts and seeds that are marked as being processed on shared equipment also. Some manufactureers do a good job of cleaning their equipment between runs but some don't. Often if you have a question on a particular product, you can do a search on this forum and find some info about it.

Nightshades are potatoes, tomatoes, peppers and eggplant. Some people react to all of them, some only to one or or two etc. Sometimes people react to a food intolerance within minutes or hours, and sometimes it takes days for a reaction build up to a noticeable point. And the reactions can be a wide range of symptoms, from joint pain, to mucle twitches, to scaly skin, rashes, anger, depression, hair loss, vision changes, migraines etc..

I think you are right, eating gluten-free can be a very healthy diet change for many people. A whole foods diet has far fewer man-made chemicals in it which is probably good IMHO.

I haven't had the particular issue with riding in cars you described for your hubby, but I have had plenty of times I just didn't want to go anywhwere for fear of problems.

Your hubby may heal pretty fast or it may take awhile. Everyone seems to be slightly differnent on these things. Younger people do heal faster generally tho, if they are good about sticking to the gluten-free diet anyway.

Having celiac can mean having a touchy digestive system, that reacts negatively to many things. So it may not seem to make sense what sets off a reaction for the first couple months. Thats a good reason to keep the diet simple and whole foods. Fewer food suspects.

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I just thought I'd say, even though it has been said, that you are amazing. My husband has been loving and supportive but you have gone so far above and beyond what so many of us could dream. You are the model spouse and any celiac would be lucky to have you. I image that in this terribly trying time that your husband's life is made much simpler and easier by the fact that you are making the changes with him, and that you are so very understanding of what he is going through. You've gotten lots of good advice here and I have nothing useful to add. I just wanted to say kudos.

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I’m looking into celiac support groups nearby, thanks for that link! We previously ate quinoa (as a halfhearted attempt to eat healthy) and I know all about what happens if you fail to wash it. :( However, my Husband seems to have a reaction to it, so we’ve eliminated quinoa from out diet, rinsed or otherwise. Flaxseed is also on the list of foods that cause reactions for him.

I’m very cautious of nuts, as I called a company that didn’t have any information on their package and they processed on equipment that processes wheat. I refuse to spend money on any product that’s even processed in a facility that also processes wheat. No point in risking my Husband’s health for the sake of convenience.

He gets severe belching/bloating when he’s been glutened or exposed to foods he’s intolerant to. We figure we’ll cut out anything that he possibly has a reaction to while he heals and then experiment with reintroducing foods. (Of course, I don’t mean gluten foods, just grains, potatoes and the like.)

The belching was actually what finally prompted the doctor to test for celiac. We’d just eaten noodle soup before his doctor appointment and my Husband was belching up a storm. While waiting for the doctor in the clinic, I used my phone looked up why he would be belching after noodle soup and found info on celiac. After much prodding and me pointing at the information on my phone, he finally listened. Why is it so uncommon to test for celiac?! (Sorry… End rant.)

Today, my Husband is complaining of a mental fogginess worse than ever before. He describes a buzzing in his head and a great difficulty forming thoughts. His depth perception is skewed, too. I convinced him to nap and hope he’ll be better when he wakes.

My only real question today is… Is 72 ounces of water per day enough? I’m wondering if he’s dehydrated. He says his electrolytes are balanced (he used to be a swimmer and is pretty keen about such things) so I’m thinking this buzzing must be from dehydration. Or is that just another healing thing? He has a hard time making decisions right now, too.

Sorry if I write essays with every post. I now come here when my Husband is sleeping. It helps calm my nerves. I can’t really explain it, but it helps to feel like I’m helping him. I just quit my job at a local convenience store to be home with him all the time while he heals. He said he was feeling excessively lonely, and I didn’t think that’s good for his healing. He lost his just after his diagnosis. He was falling asleep at work. I have enough passive income from other sources to be okay for awhile, just us staying home. (What was I saying about writing too much? Oops)

Anyway, a note just for RoseTapper: Thank you so much for the recommendation for the Metagenics powder. I’ll see about purchasing some for him very soon. Anything to help him feel better ASAP. I asked my Husband about Imodium, he said he’d be willing to give it a shot next car ride. If his anxiety was calmed, I’m sure car rides would be easier on him.

That quote is wonderful, thank you so much. He just started doing light yoga, perhaps I’ll have him meditate on it/it’s meaning as he stretches. My Uncle uses meditation/astral travel (I believe that’s what he calls it.) as part of his therapy, as he has stage III cancer. I’ll also pass the quote along to him. Once again, thanks so much, and I am sorry to hear about your cancer. My prayers/positive thoughts are with you.

Thank you all so much for being here. You’ve already helped my Husband and I so much. You help me stay calm and confident, which keeps him calm and confident. :)

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Katty, Myself & quite a few others get a LOT of stuff from Nuts.com. They have certified, batch tested gluten free items & we're not just talking about nuts. There are flours & candies & seeds & nuts & dried fruit & chocolate for baking or eating & more. I wouldn't get my nuts anywhere else! I have never heard of anyone having a problem with anything they got from them. Make sure to click on their gluten free section.

IMHO the mental fogginess & buzzing is still part of the withdrawal/adjusting process. I had that off & on for months.

No problem with writing novels here --- the more info. the better we can help you.

Finally, let me speak for all of us in saying that you are playing the care giver role in this & as such you will most likely at some point need to scream. :) Feel free to rant, rave, scream , whine or cry when the need arises. We get it! And it's totally allowed here. Just letting you know.

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I think it is a brilliant idea for you to come here. It can be lonely for anyone starting out.

Keep at it, you know you are going in the right direction

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Hi Katty,

Yeah, quinoa didn't work for me either in the long run. I haven't tried it in quite a while tho, might be ok now I guess. One day I will try it again. If you keep with a simple whole foods diet like you are doing it should help a lot. Sweet potatoes are safer than regular white potatoes and are much better nutrition wise too. they make good fries in the oven or you can buy Food Should Taste Good brand sweet potato chips too. They are gluten-free. Not all FSTG chips are gluten-free tho, so check the labels. Mission corn tortillas are also gluten-free and a pretty inexpensive way to make a roll up. Just rinse them in water and nuke them for a few seconds, or rinse them and throw them in a skillet with a lid. The yellow corn versions are thinner and less likely to break when folded. They are made on dedicated lines and I have never had a problem with them.

Bone broth is good for nutrition also, and is easy to make. Just cook some leftover bones from chicken or anything in water with some vegetables. The bones have minerals in bio-avaaialble form in them and they are easiy absorbed. Better than a vitamin pill. There's a thread or two on the forum somewhere about ways to make it.

It's pretty common for people new to the gluten-free diet to make mistakes and get cross-contaminated at first. So don't be too upset if that happens. We all do it sometimes.

Some of the things that help people when they do get glutened are:

Pepto-Bismol

Peppermint tea or Peppermint Altoids (to get gas out of the stomach)

Aspirin

Lots of water

Pro-biotics

Some people are drinking nettle tea and find that helpful.

Jumbo size toilet papper rolls ( :) )

Often it seems that people with celiac have low stomach acid, which can lead to problems with pathogens getting into the gut. So Betaine HCL is a good thing to have on hand.

DGL (Deglysterenized licorice) and mastic gum are two natural cures for H.Pylori, and can be helpful to take once in a while. DGL especaily is good for it. Mastic gum is reputed to be good for digestion.

Just some ideas of things it would be good to have on hand. None of these are real expensive usually.

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I’m sorry for my hiatus, neither of us has been feeling very well for the past few days. I’m not sure what it is, but I’m guessing just part of the gluten withdrawal.

We actually used to order a lot of stuff from nuts.com (when they were nutsonline), but I haven’t looked at them since his diagnosis. We’ll have to make an order from them soon. Thanks for reminding me! I’d all but forgotten about the website.

I make bone broth, actually, though I’d always just called it stock. So glad to hear that it’s good for him, I had to give away cans upon cans of gluten-containing broth.

Thanks so much for the list of just-in-case stuff. :) Every little bit of information helps.

We took him to get his vitamin levels analyzed, we’re still waiting on the results. I don’t know why, but I was thinking we’d find out the same day! I completely forgot about them sending it to a lab. My memory hasn’t been too sharp since going gluten free.

We’re going to start walking tomorrow, which is something neither of us seem to be looking forward to given that it’s winter time. However, I know being out and exercising together will (should) help us feel better, and it’ll be a bonding thing hopefully.

I get lonely when he’s sleeping, but other than that, I’ve been okay. He’s been a lot more emotional on all fronts lately (hence why I quit my job). Very lonely when I’m away for extended periods. I don’t mind, it’s endearing, but I hope my taking care of him doesn’t cause extreme codependency in all aspects of life. Most of my outings were with friends and based around food, though, and most (if not all) of them think I’m ridiculous for giving up gluten.

They’ve actually dropped out of touch since he got diagnosed and seem reluctant to come over for dinner like they used to. It’s so irritating, but it just shows I need better friends anyway.

Our families can’t believe I gave up gluten, either. My Mother tried to take me for pizza the other day, after having a loaf of bread in the car. I told her that this is the exact reason I can’t eat gluten. I don’t want him to feel that temptation (and, from my perspective, disrespect). She was just trying to be nice, I know, but I had to make it very clear that I’m treating this as though I have celiac, too. It’s sort of an all or nothing thing, and I love him dearly, so all was my only option. And I don’t regret it one bit.

I made sweet potato fries with steak last night and it was a big hit. He’s so happy to have meat with every meal and he says it feels very gourmet, so that’s a bright point. I purchased a few paleo/primal cookbooks and they’re really helping. I realized I didn’t replace our drinking glasses, so I ordered new ones and I really hope I haven’t been glutening him with them. I’m not sure what gluten food would have been in them, but I just want to be sure.

Once we’re through the holidays, things will be better for both of us. We’re skipping Christmas dinner because there’s a long-standing tradition of bread bowls, and we don’t want the temptation. We’ll do an early Christmas instead, but I know he’s down about missing the bread bowls.

Anyway, thanks so much for being supportive. It helps to have somewhere to come and talk. He and I try not to talk about food too much because we always remember one more thing we’ll never have again. And whenever we talk too much about celiac, food comes up, of course.

Edited by Katty
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Oh Oh, you said the Christmas dinner phrase. Better duck, cause, now you are going to get hit with suggestions for Christmas dinner/day foods. There are usually threads for ideas on that around this time of year. Seems like there was a Christmas stollen thread a while back. I don't remember bread bowls, but maybe they have been done.

Yep, lots of social occasions are centered on food, mostly on eating it. Stuffing it in our pie-holes. But your friends may adjust after a while. Lots of people are trying gluten-free these days. If they want to be trendy, they need to get on board! :) Well, that won't be a popular opinion here. Oops. It's not just people with celiac who do the gluten-free diet. Some people with diabetes, and some people with Crohn's and other conditions also find it helpful. GFCFSF is used for some autistic children. too. gluten-free can be very low carb if you stick with mostly meat and veggies.

I am sorry you aren't feeling well. You may be experienceing some bacterial die-off since you have changed to gluten-free Katty. That can cause some symptoms. You might find it helpful to take some pro-biotics yourself.

By the way, tell hubby for me you are a keeper. :D

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This is like whole wheat bread - soft, yet grainy in a good way. It's called Bun in a Bowl & can be used for bread or burger buns.

Here's the recipe:

1 large egg (for low iodine use 2 egg whites & no egg yolk)

2 Tbs. brown rice flour (you can sub white rice flour or sweet white rice flour)

1 Tbs. almond meal (you can sub cashew meal)

1 Tbs. golden flax meal

1/2 tsp. baking powder

3/4 tsp. sugar

1/2 tsp. cocoa powder

shake of salt

Spray a custard dish (or any baking dish that will yield a hamburger bun sized "loaf") with non stick spray. Crack egg into dish and stir with a fork until it's well mixed. Add all other ingredients and stir well. Cook in microwave on high for 90 seconds. You'll have to loosen around the edges with a butter knife, but mine came out pretty easily.

I'm using some self-control to wait until lunch time to make another one and create a delicious turkey sandwich. (insert drool icon)

WHITE BREAD VERSION OF BUN IN A BOWL:

1 large egg (for low iodine use 2 large egg whites & no egg yolk)

2 Tblsp. White rice flour or sweet white rice flour

1 Tblsp. cashew meal (flour) if not sensitive to salicylates you can use almond meal (flour)

1 1/3 Tblsp. Golden Flax Meal

1/2 tsp. baking powder

1 tsp. sugar

shake of salt

Spray a custard dish (or any baking dish that will yield a hamburger bun sized "loaf") with non stick spray. Crack egg into dish and stir with a fork until it's well mixed. Add all other ingredients and stir well. Cook in microwave on high for 90 seconds. You'll have to loosen around the edges with a butter knife, but mine came out pretty easily.

And here's a recipe for you too. A friend on a gardening site discovered this by accident when her elderly mom goofed making Tollhouse Cookies. A fortunate OOPS as far as I'm concerned. Neither she nor her mom are celiac but she posted the recipe for me. She said they were quite good!

Gluten Free OOPS! Tollhouse Chocolate Chip Cookies

Kim's Mom's Oops Tollhouse Gluten free recipe

1/2 cup shortening(we used butter flavor crisco)

1/2 cup Splenda

1/4 cup Brown Sugar

1 egg

1 teaspoon vanilla

3/4 teaspoon salt

1/2 teaspoon soda

1 cup semi-sweet chocolate morsels

1/2 cup chopped nuts ( we used Black Walnuts)

and here is the goof part

1cup powdered sugar( was suposed to be flour but Mom oopsed)

Cream Together Shortening ,brown sugar,splenda, egg and vanilla.

Sift together powdered sugar, soda and salt; blend into creamed mixture.

Drop by teaspoon or cookie scoop 2" apart on greased cookie sheet.

These spread out and become very thin almost lacey.

Bake @ 375 degrees for 10-12 minutes. Cookies will be thin and golden. Remove to cooling rack and enjoy.

They actually did taste good, very sweet. I'm not sure if they would solve a tollhouse craving or not but worth a try.

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My memory hasn’t been too sharp since going gluten free.

We’re going to start walking tomorrow, which is something neither of us seem to be looking forward to given that it’s winter time. However, I know being out and exercising together will (should) help us feel better, and it’ll be a bonding thing hopefully.

Most of my outings were with friends and based around food, though, and most (if not all) of them think I’m ridiculous for giving up gluten.

They’ve actually dropped out of touch since he got diagnosed and seem reluctant to come over for dinner like they used to. It’s so irritating, but it just shows I need better friends anyway.

Our families can’t believe I gave up gluten, either.

I realized I didn’t replace our drinking glasses, so I ordered new ones and I really hope I haven’t been glutening him with them. I’m not sure what gluten food would have been in them, but I just want to be sure.

but I know he’s down about missing the bread bowls.

Anyway, thanks so much for being supportive. It helps to have somewhere to come and talk. He and I try not to talk about food too much because we always remember one more thing we’ll never have again. And whenever we talk too much about celiac, food comes up, of course.

Hi again Katty!

You are likely having a gluten withdrawal if your memory feels off and you feel yucky right now. Hold tight--it will pass.

Drink a lot of water--both of you.

Walking is very good for you guys. You say it is winter now. I do not know where you live, but maybe you can drive to a shopping center

and walk around inside? (you wouldn't happen to be in upstate NY by any chance--near Albany maybe? Just a shot. If you were, I'd have you guys over for dinner tomorrow. I mean it.)

anyway,

A few thoughts ---because I can see you are going through all sorts of emotions and feeling stranded by friends and misunderstood by family members right now and my hubs and I went through all of this too--together.

He gave up gluten voluntarily after my diagnosis and he has never regretted it.

He does not miss it at all and even when he could eat it out (away from me), he hasn't.

He thinks he feels all the better for it (which suggests he had a gluten issue himself)

You need not to replace glassware hon. Just things that are porous like plastic colanders, plastic slotted spoons, wooden utensils. wire mesh strainers, scratched teflon pans or a pizza stone. Also-- wooden cutting boards. I replaced my toaster and I donated my bread machine to a woman's shelter, but many people clean them up and continue to use them.

You are looking at this "as things to give up", but in reality almost everything you once ate really CAN BE made again! You just need to find

gluten-free substitutes... yes, there are even "mock rye" bread bowls.!! :)

Do not isolate because you are gluten-free. You should still visit family and friends.

Bring your own goodies with you. You may wish to educate them about celiac, so they do not view what you are doing as "weird". If they continue to be non-supportive or mocking, then yes, maybe it is time for new friends. (sorry, but you guys can't live your lives with so much negativity around you. That's no fun!)

Once you get your sea legs back, you can see that food..... is still food.

Invite people to YOUR house. I had a 4 course dinner party for 8 relatives recently and no one missed the gluten.

This will all come to you, in time. I have 2 years under my belt now, but at the beginning, we felt the same way you guys are feeling.

Right now. let's get your hubs healing and you feeling better before you try and take on too much.

But I promise you, this is not a death sentence and it should not be the end of your social life.

I had a few friends desert us when I was very ill. That broke my heart.

But I also had a chance to visit 3 other couples in their homes during the last year. They missed me and worried about me when I was very ill for 3 years before my DX and they were happy to see me alive and kicking! :D

And they cooked for me!!. They took the time to learn about celiac & gluten and what to do to provide a safe meal for me. They asked me a lot of questions before we came over and I was deeply moved by this--and I gladly brought them all a flexible cutting board to use. I supervised dinner prep and helped with the dicing and slicing and I brought the wine and a wickedly decadent flourless chocolate cake for dessert. Everything was "normal" again.

The point is....you are still new to this and it is overwhelming and seems like you will never be "normal" again.

But you will find a "new normal" , hon---and soon, you both will feel less emotional and scared and overwhelmed.

The focus will no longer be "celiac". or gluten and "what can I have to eat" but just.....enjoying your life once more. I noticed a few weeks ago that I never say "Gluten free" this or "Gluten free" that anymore. It has become the norm... It's just food.

Hang in there. and call on me if I can help in any way. We've been where you are and I want to assure you--it gets better!! ((hugs)) to you.

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Watch out for the Splenda, especially the bulk splenda which may have fillers in it, which might not be entirely gluten free. That was one of the things I had to give up last year, switched to a gluten free stevia for low sugar baking.

Also, Crisco has soy in it, and some people don't do well with soy, but there are many other oils such as palm shortening, coconut oil, olive oil, lard, etc, (even butter) that can be baked with.

For the bun-in-a-cup microwave baking, a tiny bit of pure apple cider vinegar, say, about a quarter to a half teaspoon, helps the baking soda to rise. Substitutions may be made for the flax, such as chia seed or amaranth or buckwheat.

Since you are eating pretty low carb/starch, eat a lot of good fats to help fight the fatigue, because they are slow burning fuel, or, add in a bit of well rinsed and drained beans, or potatoes, or rice, if he needs them for energy. A gluten free vitamin B complex can also really help with this.

My spouse gave up gluten at home and most of the time out at restaurants (it doesn't bother me, because I am way past the "wish I could have that phase"). He's a keeper, too. :D

Holidays & Relatives ......... :ph34r::blink::wacko:<_<

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Hello again, everyone :) I had a minor family emergency and had to be away from home (and my laptop, since I left in such a hurry) for a while. My Husband seems to be improving mentally, meaning he says the brain-fog isn’t as bad, and he’s not sleeping as much these days. Sometimes he sleeps for like six hours now.

I’ve decided to make bread bowls using the White Bread recipe provided, and I’ll make the cookies, so we can attend Christmas as normal. It should make things so much easier on everyone, and keep the family happy.

Thankfully, I’m feeling better these days. I got extremely sick off of soy milk (I was putting it in my tea) and seem to be intolerant to it. My Husband doesn’t drink soy anyway, so it’s no big issue.

I wanted to extend a personal thank you to Irish Heart, I would love to have dinner with someone who understands! But, I live in Colorado, so that’s not exactly a possibility. :)

We’ve been walking around the block since I got home. My Husband actually started walking while I was away. He’s not experienced with cooking, so we spent many hours on the phone with my walking him through how to cook things. It was cute and seems to have given him a bit of a passion for it.

Travelling was odd for me. I could have eaten gluten, but I refused. I stuck to the diet as though he was there eating with my. And my (extended) family called me crazy. They did things just to tease me and it was so annoying. But, I survived! And so did my Husband, cooking for himself. He even came up with little lettuce cups that he’s addicted to now.

We invited a friend for dinner last night (kind of a “welcome back” thing for me, I guess) and I cooked. She didn’t complain one bit! It was nice. The family is kind of starting to get it, too, though his Father still doesn’t take gluten-free seriously. Despite diagnosis by biopsy.

His tests came back. He’s deficient in Vitamin D, which I expected, but all of his other levels are fine and so is his thyroid. So, the doctor (new doctor, I’m finished with the old one) prescribed 15 minutes of sunlight daily. He said he could get it through an open window, since winter attire doesn’t allow for much sun exposure.

At some point while I was gone, my Husband had a fit of rage (he says he got depressed over everything he can’t order in, like he used to do when I was away) and broke a few things in our home. A mirror and the mug he threw at it, to be specific. This is so unlike him and I was a little put off by it. I’m also worried about his depression making him suicidal or something. I know he’d never hurt me, but I can’t imagine him breaking things. I don’t want to leave him alone anymore.

Does anyone have experience with such severe depression/anger? He gets upset if I call it a mood swing, so I don’t think I’m understanding what he’s going through fully.

I went shopping when I got back home and purchased lots of things we’ve never tried before. Now I’m regretting that. It’s almost like I’m just asking to discover an allergy/intolerance. We’ll see, I guess.

It feels good to be back. My Husband read this thread while I was away and said that you all made him truly value our relationship, so thank you all for that.

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I have one more question (I’d edit my original post, but it’s not visible yet, given my “new-member” status)… My Husband’s stomach hasn’t been regular at all lately. He gets stomach cramping unlike anything ever experienced when we were eating gluten. Like a stabbing pain, he describes it. He’s gone two or three days without a bowel movement followed by a day with two or three.

Our (new) doctor said to expect such things over the next year and that it’s nothing. Is it the bacteria in his stomach regulating? Is this normal?

My Husband instinctively thinks it’s just his body trying to figure things out. It doesn’t correlate with any specific food or anything. Pepto doesn’t help him too much, either. I ordered a few things to help him today, but they won’t be here for a while, so I want to find out as much as I can in the meantime. Both doctors seem to think my concerns are silly or unfounded. It’s so annoying!

We completely changed our lifestyle, we just want to know that we’re doing things right, which is why I ask so many darn questions! (end mini-rant)

I have him drinking about 90 ounces of water daily, eating several times a day. My husband also thinks it might be all the healthy fats in our diet, since I tried to avoid oil/fat before his diagnosis. I didn’t understand that bodies need those healthy fats, but after researching, added olive oil, fish and nuts into our diet. Anyway, is the fat thing possibly it? Is the doctor right, just deal with it for the next year or so?

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Hi Katy,

Yes, it is possible his digestion will be unsettled for the next year or more. It is also possible it will get right as rain in a month or so. Sticking with whole foods is one way to speed up the healing process. Adding lots of new things right now is not great idea really. If you are adding things make sure to only add one new thing a day, not don't add another one for several days after that. Otherwise reactions can't be pinned down to a specific food. The simpler the diet the better to start out. Starting out is not a week or two, but several months. It's very easy when you are new to the gluten-free diet to make mistakes and eat something with gluten or CC without realizing it. That's another reason to keep the diet simple, so those mistakes are less likely.

By simple I don't mean you can't eat good food, but avoid processed foods and if you want something more complicated make it yourself at home. That way you know what the ingredients are and aren't guessing so much. It requires a lot of cooking but there are things you can do to make it easier,. Like making large batches of food and freezing some of it for later. If you do that every weekend you can have a freezer full of homemade food in a month. If you do this keep the spices and additives to a minimum. It is no fun to make a large batch of food and have to throw it out because you added some ingredient that is a problem. Instead add spices when you actually heat the food up to eat it.

Gluten can affect the brain. People here have reported anger, anxiety, depression, nervousness, insomnia and other affects from gluten.

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    • First, do you have celiac disease?  I assume you do.  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.    
    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
    • I honestly feel like both doctors think it's all in my head even though there is proof.  Yeah there was a point when I felt crazy.  That was when I was being shuffled from dr to dr being given individual diagnoses of my problems.  None of those diagnoses ever made me get better.  Seriously I was diagnosed with heart palpitations, neurocardiogenic syncope, I was given a butt load of steroids because a dr felt like I was producing too much adrenaline, freaking had a few tell me I was depressed, and the good ol IBS.  It seemed most wanted to push pills.  It's all just ridiculous!
    • I can't believe your doctors!!! You have a daughter who is dx'd already! Yet the ped doesn't want to test your other kids unless you have a dx????!!! Are you kidding me???!!! That's absurd!!! They have a first degree relative who has been dx'd with celiac already. There is no need to wait to see what you turn out to be!! And then, and then, and then....don't even get me started on your doctor!!! Does he have brain damage? Oh this is insane & ridiculous!  I have never heard of a disease that doctors are so unwilling to consider or test for OR to diagnose as this one! Usually they are hot to trot to make a dx but say the word celiac & they shake in their boots. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!!!!!!
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