Need Some Guidance

[jmwong982]

Hi Everybody,

I am new to this forum. About a year ago my fiance was diagnosed with celiac disease. I have a few questions about the disease, but most of all how i can help. For the past year, we have made blind attempts to guide him through the gluten-free lifestyle and it has been tough to figure it all out. We are still making silly mistakes (like today we accidentally were eating sushi and he ate the imitation crab in the California Roll - which we hear may contain gluten). He seems more and more depressed each day and is constantly grumpy. His medication for acid reflex may or may not have gluten and I am concerned it does. I purged the house of gluten, i have sent out information to local restaurant, and bought him books etc..I just want him to get better, but I admit it gets harder everyday dealing with his misery. I know that sounds awful, but I don't think I can ever fully understand so I empathize and try to help to fix the issue. I guess I just need some answers to questions I am not even sure how to ask. Any help would be great...here are some initial questions...any answers would be appreciated.

1) What headache medication can he take to help with headaches?

2) How do we know what prescription medications to avoid?

3) Are there any hidden Gluten Foods or items I should know about?

4) Should we get rid of all our old equipment we have used in the kitchen before we knew of his celiac disease?

5)is our toaster oven un safe?

6) he has headaches, stomachaches, fatigue, grumpiness, anger, etc...what can i do to help him with these symptoms..are there any medications to help ease him symptoms?

7)Which enzymes can he help to help ease his digestions..where do we find them?

We are going to support group this friday, i found him a mentor, is there anything else we can do?

[hannahp57]

I can answer a few questions. i take papaya enzyme for digestion and b12. buy them both at GNC because most of their products will say "gluten free" under their ingredient list.

as far as throwing away old dishes etc. here are the things that need to be replaced:

toaster

wooden things(spoons, cutting boards, etc)

cast iron

non stick (such as teflon) things

these items are porous and can absorb and contain gluten

for prescriptions meds get into contact with the manufacturer and possibly your pharmacist (sometimes they are helpful, sometimes not)

i think thats about all i can help with. hope that gives you something to start with. keep in contact, you can just about always find the answer from someone on this board

[JNBunnie1]

Hi Everybody,

I am new to this forum. About a year ago my fiance was diagnosed with celiac disease. I have a few questions about the disease, but most of all how i can help. For the past year, we have made blind attempts to guide him through the gluten-free lifestyle and it has been tough to figure it all out. We are still making silly mistakes (like today we accidentally were eating sushi and he ate the imitation crab in the California Roll - which we hear may contain gluten). He seems more and more depressed each day and is constantly grumpy. His medication for acid reflex may or may not have gluten and I am concerned it does. I purged the house of gluten, i have sent out information to local restaurant, and bought him books etc..I just want him to get better, but I admit it gets harder everyday dealing with his misery. I know that sounds awful, but I don't think I can ever fully understand so I empathize and try to help to fix the issue. I guess I just need some answers to questions I am not even sure how to ask. Any help would be great...here are some initial questions...any answers would be appreciated.

1) What headache medication can he take to help with headaches?

Aleve pills are safe, I take them.

2) How do we know what prescription medications to avoid?

Call the manufacturer for each and every one, every time you fill. I know it's annoying, but do it anyway.

3) Are there any hidden Gluten Foods or items I should know about?

Yes- don't eat out. For now, try to make everything at home. Stick to companies that clearly label gluten containing ingredients, Kraft is one of them. Walmart has a lot of clearly labeled gluten-free foods. Lays stax are also gluten-free. If you shop at Trader Joes, watch out, a lot of stuff has cross contamination issues. Fresh foods are always best.

4) Should we get rid of all our old equipment we have used in the kitchen before we knew of his celiac disease?

You should get rid of anything porous- Teflon, cast iron, wood, scratched anything. Stainless steel, smooth plastic, smooth metals are fine.

5)is our toaster oven un safe?

Yes, you need a new one. Colander and any sieves, too.

6) he has headaches, stomachaches, fatigue, grumpiness, anger, etc...what can i do to help him with these symptoms..are there any medications to help ease him symptoms?

He needs to be gluten free, and he's not, according to the questions you've been asking. Aleve is good for headaches, so is rosemary tea. Can you be a little more specific about the stomachaches? The grumpiness and anger will probably start to fade once he's truly gluten free. Also keep in mind, many Celiacs have other food intolerances. He should have an Lame Advertisement test for other food problems. I myself can't have peanuts, they make my stomach mad. A lot of Celiacs can't have dairy.

7)Which enzymes can he help to help ease his digestions..where do we find them?

Try a papain-bromelain chewable, make sure it's gluten free. You can find them at a health food store or a Whole Foods, probably. There's a member here who's user name is Yolo who has the best advice on herbs and supplements for stomach problems.

We are going to support group this friday, i found him a mentor, is there anything else we can do?

I think you're doing great!

[jmwong982]

Everyone's advice is very helpful...keep it coming. We are getting ready to go on vacation so I am trying to prepare the best I can. Everything is harder on the road, but we have to go 9it is with his family)

As far as the manufacturer for prescription drugs..how do i know who makes it? is it on the bottle? i will mention the other test for his other food allergies. We have a lot of kitchen equipment to get rid of..(

[Lisa]

Many items you can check online. Google, for example "Tylenol - Gluten Free" . You would be surprise how easy things can be to find their gluten free status.

The Product Thread here can be very helpful.

Good luck.

[ravenwoodglass]

One thing that hasn't been mentioned yet - do you wear any lip glosses, lip sticks, makeup etc that may contain gluten ingredients? Also do you still eat gluten and if you do are you making sure to brush your teeth before kissing? Those would be sources of CC for him.

[jmwong982]

I hadn't thought about makeup. I am trying to make all the right calls here. I just went out and got some b-12. and i hadn't thought about the makeup or lipgloss...i just wear lip balm sometimes..any makeup or product suggestions? where can i find the product thread. I am not entirely sure how to use this post yet. I tried to get in touch with the user Yolo but was denied doing so. I don't know why...

So how can i look into my make up am i just looking at the ingredients.?

I still need to get a new toaster oven..our new oven should be gluten free because we just moved but our kitchen stuff was old and needed replacing anyways...i am glad we are doing it after finding out about hid celiac disease.

[Takala]

I am the gluten intolerant one in our relationship.

Altho my spouse is very supportive, it is still up to ME to be responsible for whatever goes in my mouth, on my skin, or what the pets eat and then drool, not him.

Until your fiance comprehends this idea (or has suffered enough to get motivated to do it right ) no amount of work on your part will do any good if he's bent on sabotaging himself.

Family members (especially parents) can be even worse at this as the social pressure to eat anything, anytime is so ingrained with them.

[mamaw]

A support group & a gluten-free mentor is great. He will have to want to follow this lifestyle to regain his health. No one can do it for him. Same as a drinker or a drug addict , they must want themselves to get help & get better.

You being very supportative is wonderful & truly needed ... I wonder if he knows how lucky he is!!!!! Kudos to you ...

Hidden gluten is everywhere & again everyone must find what they can tolerate. Some get ill at the smell of wheat bread baking, others are less sensitive . One can have many reactions to gluten... itchy skin, hives, depression, & so on.

To things that come to mind is soy sauce products & malt ... LaChoy & Wal-Mart brand soy sauce are gluten-free & tamJ... Foods that contain soy sauce most likely is not gluten-free...

Malt is in beers, malted milk, malted milk balls candy......

You mentioned vacation. Do the homework before you get to your destination & it will be more enjoyable! Know where & what is safe to eat.. Always carry a doggie bag of gluten-free goodies!

Protein bars are great when the hungries hit & no place safe to eat....

Many of us also have allergies to other foods ie: nightshade vegetables, soy,corn, sulphites in wine..

Back to dining out..... steak dust & grill baste that is used in many restaurants contain gluten so always ask. Many places will cook a steak wrapped in foil to prevent coming in contact with gluten things...

I'm not sure where you live or where you are going on vacation but here are a few places that have a gluten-free menu:

Outback

Red Robin

Carrabas

First Watch

Longhorn Steakhouse

Chili's

Wendy's

In & Out Burger

Bahama Breeze

there are many more....

Replacement items:

toaster

hand mixer

cutting board, plastic utensils, any thing with a porous surface, teflon. plastic storage bowls. Any item with scratches.

bread machine

You should always check on any medication with the pharmacy or contact the maker.

I take excedrin for migraines, its the only thing that works for me!

B-12 & Vit D-3, levels should be checked by bloodwork. Probiotics & enzymes are also very useful.......

hth

blessings

mamaw

[wschmucks]

Hi there,

I just want to say how lucky your fiancee is to have you guide him through this. It can be so stressful and exhausting and you seem so supportive.

Everyones spot on with thier advice. So I will add my two cents for the vacation: DO NOT EAT OUT! This part is going to take him a really long time to get used to. The only place I will ever eat out is at sushi and the only thing i wil order is sashimi with nothing on the plate but the fish and then I'll put lemon juice on it. Really and truly its the only way to really know, and especially in the beginning. SO how do you travel? Well, if at all possible get a room with a small fridge and microwave (if not a small kitchen). Bring food with you, like canned tuna, gluten-free bars like LaraBars (my favorite), fruits and vegetables, trail mix, gluten-free rice meal (like oatmeal-- just add water). The point is I wouldn't recommend eating out. Also vacations involve alcohol. I stick to Wine and Vodka. Some people are bothered by vodka even though its suppose to be gluten-free with triple distillation (make sure its not flavored vodka-- i made that mistake). Whatever his favorite drink is make sure its gluten-free....I still havent mastered this so i stick to the two.

Its gonna take a while for him to feel better, its not an over night process. Its normal to get depressed at first and be grumpy, try not to take it personally and you guys will master it soon!

[YoloGx]

Dear JMwong, I don't know why you were denied sending me a message--but thank you for the compliment of trying to! I will have to look and see what I may have de-activated.

I think its fantastic that you are being so pro-active and supportive of your boyfriend. He is one lucky guy! So often so many of us have had the opposite experience--its so good to hear of someone like you who isn't saying its all in his head etc.!

Everything suggested above sounds really good---including the lipstick etc. I would add lotions and soaps, toothpaste and mouthwash etc. too and even certain building materials like pre-mixed plaster compound, fix-all and the like, and even cutting plywood or particle board!! (use a mask while handling and wash afterward--maybe even change clothes).

However if your guy ends up being really sensitive (like me and many others) he may need to go the extra mile--perhaps especially at first. I just recently expanded my semi-paleo diet (i.e., grain free with no sugars) to include much of the scd diet (specific carbohydrate diet--Google this to learn more).

The thing I notice with the scd diet that is so great is the home-made yogurt--after fermenting it 24 hours plus. It gets rid of all the lactose which can be a big problem for people with celiac. We usually have developed a "leaky gut" and thus many of us become intolerant of different foods. While many of our food intolerances tend to vary from person to person, lactose intolerance is one of the most common.

The other great thing with the 24 hour yogurt is that there are tons more organisms in them than in either regular yogurt or even in the pro-biotic pills you might buy. This has positive effects beyond just being able to eat some dairy. I thought I was completely intolerant of all fruit except lemons for instance but am discovering I can handle eating a little banana with this special yogurt without reacting negatively.

Theoretically with the scd diet I should also be able to handle eating a little honey, whereas up til now I have thought I couldn't handle eating any sugars at all--and relied on stevia only as a sugar substitute (stevia is also something he might also want to try--just make sure its both gluten and lactose free--it is very possible he could also have candida overgrowth if he is really grumpy). I haven't tried the honey yet, however, given the fact the banana seems OK, I am now more willing to give it a go pretty soon.

The main gist of this is that the 24 hour yogurt is helping not only me but also my room mate who up til now has not been able to eat yogurt at all without ill effect. It also seems to be giving both of us a lot more energy. This makes sense in that many of us with celiac have been thoroughly bombarded with antibiotics at various times in our lives due to constant ill health. It could well be that we have a special need to have higher quality pro-biotics from live foods than many others--though I bet it would also help a lot of other folks too.

Another thing that has been helping us both is to eat a lot of fresh veggies. At first one needs to have them cooked due to the tender gut due to the damaged villi. However my friend and I are discovering one can also use the blender and just blend the fresh veggies up--plus this way one can ingest a lot and still retain the fiber one misses if one juices one's greens. This has made a night and day difference for my room mate. He usually has no energy, grumps etc. and can't sleep. Now he has tons more energy and is more positive plus the sleeping part is a little better.

If I were to suggest an enzyme or group of enzymes beyond the bromelain/papain, it would be pancreatin--especially at first while his gut is healing--particularly important after eating meat. I use the Now "Plant Enzymes" generally since they are cheap and have a variety of good enzymes in them including bromelain.

I also highly recommend a few herbs--first and foremost marshmallow root and/or slippery elm. Someone just told me these may not be on the scd diet, however, since they are mucilaginous. Whether this should convince me or not I am not yet sure--I need to know more. Nevertheless both herbs really take down the inflammation in the gut (and stomach and kidneys) while helping heal it at the same time. In Europe they have been used with people who have "wasting disease". i.e., celiac/sprue, for centuries. If one has been CC'd they are particularly powerful.

Elsewhere I have described the value of taking dandelion root or milk thistle (for clearing the liver)and yellow dock or Oregon Grape root (beneficial for the intestines). Echinacea or cleavers are good for cleaning out the lymphatic system. You can just Google the herbs above and find out more. Just make sure you don't use tinctures since the alcohol is very suspect. I find these detox herbs good against aches and pains, swelling, depression, headaches and grumps.

Plus exercise and saunas are fantastic if you can get him to do it.

And hand washing before eating etc. is a must!

Its a lot to learn, but after a while it gets easier...

Bea (aka Yolo)

[jmwong982]

Thank you for finding me when I couldn't find you. I feel you must have been sent to me by the celiac gods. I want to thank you for all the advice you have given me. I will be sure to pass on the word to Brent and begin the process as soon as possible. I have already begun to take steps to help Brent heal.

I wanted to ask you about Candida? We are wondering if that is related to his cool burning sensation in his right lower abdomen that spreads across his abdomen? We have heard similar descriptions of discomfort on this forum but no one seems to know what it is or how to help it. Do you have any advice on this?

You seem to have a wealth of knowledge so any knowledge you are willing to share is greatly appreciated.

Thank you,

Jennifer

[YoloGx]

Hi Jennifer,

Thank you for the compliment--I do enjoy sharing what I know so others won't have to suffer as much as my friend and I have had to so needlessly--and as it seems your friend is also now so unfortunately doing.

Its too late tonight to get into the whole candida question, however it is very possible that the burning could be related to candida overgrowth or some other form of fungal or bacterial dysbiosis creating gas--or it could be an allergic response. It also could be a lack of enzymes or pro-biotics. (Again I highly recommend the 24 hour home-made yogurt for the pro-biotics.)

I wanted to let you know I just looked up more about the scd diet (specific carbohydrate diet)--and finally got questions answered about mucilaginous herbs etc. such as slippery elm and marshmallow root. According to scd theory by Elaine Gottschall (I highly suggest you look her and the scd diet up!), sticky mucilaginous herbs and foods (including apple pectin, aloe vera and seaweed!) can block the intestinal walls and thus can help further create a situation where pathogenic bacteria and yeasts can thrive--esp. since these herbs etc. often also have a type of starch that we may have difficulty digesting. I honestly had no idea about this until now and would have sworn someone was crazy for thinking it so since in my experience these substances have seemed to really help. However on further perusal the theory looks reasonable -- since after all here I am still struggling despite many improvements--and ditto for my friend.

However it is, it seems to be helping me to just do the basics of that scd diet so far and could possibly help your boyfriend too. At any rate I am going to try out going off all mucilaginous material for a while since this candida like situation for me has been so extremely resistant. After all--I was on antibiotics for pneumonia and had developed celiac apparently when I was 4 months old after being introduced to grains!! As a result I have been battling candida for years. The thing is is that the scd diet really looks like it will stop feeding the yeast etc. even though it allows fruits and some honey in the diet--so it looks like its a lot more livable than many other methods for counteracting candida overgrowth--plus its a whole lot cheaper.

Your response meanwhile actually is re-spurring me on to actually write a book about all this health stuff. I wrote a big outline last year for it and even gave a talk at a celiac support group in Santa Cruz. Although I have been hemming and hawing about it for some time, honestly I felt I still needed to learn more. But I think in the relatively near future it could be appropriate -- especially with this scd thing. I have til now been extremely busy with work but soon it should go to a more reasonable pace so I actually could do that if I so choose. So thank you again for helping to re-spur me on! I used to think my health problems were limited to a very small group however as it turns out the reverse seems to be true. The wonderful thing is with this and other sites through the Internet we can communicate and actually learn how to be more fully vital as human beings.

Bea

[ravenwoodglass]

Thank you for finding me when I couldn't find you.

Thank you,

Jennifer

Hi Jennifer, I just wanted to explain why you couldn't PM Bea. The board had been getting spammed a lot not too long ago. As a result the board now requires new members to have a certain number of posts before they can contact someone through private messages. I think that number is 15 posts but am not sure. I am glad you were able to get into contact with Bea, she has helped a lot people here and is quite knowledgeable. At times if you let the board know you want to contact someone one of the mods will contact that person so they can reply to you. That helps a lot until you get past the required number of posts.

Also want to commend you for being so helpful to your loved one. It is hard at first when we are still so ill to understand or feel up to the learning process that goes with diagnosis and it can be very helpful to have a loved one on our side in the learning process. Do encourage him to visit here himself when he is up to it. It can be very helpful to the newly diagnosed to realize that although we feel so overwhelmed and alone that there are a lot of people struggling just as we are.

[jmwong982]

I have to say to everyone that I feel overwhelmed with gratitude for the amount of support that is out there. Everything has been helpful...the patience, the tips, and the sense of urgency. Sometimes I get so sad that he is sad, frustrated or angry, and then feel bad for feeling bad myself when he feels bad. We both are becoming more and more serious then ever before because we are just now starting to understand the importance of going gluten-free and how detrimental even the slightest bit of gluten can be. It is so nice to speak with other people and we have our support group tonight. I am a celiac sympathizer. I could never fully understand, but I do believe I need to make the same gluten free changes in my life to support him and just at the pure risk that our unborn yet to be conceived child may have Celiac. I know it sounds dramatic, but now we are on a mission to get through to our family and friends so they understand this is a serious illness not to be underestimated. I don't expect people to change their lives, but I do epect them to understand we can't go along where ever they go or eat where they eat etc..

I am going to look more into the Diet you were telling me about BEA, but I am confused on the yogurt directions and where to get a yogurt maker? I think he definitely has build up of bacteria and the yogurt would be helpful.

Where would be the best place to get a probiotic enzyme to help him? I got the B12 last night, along with new pots and pans, but not sure where to find or what brand is gluten free. I took the B12 myself and have to say I feel good today.

[ranger]

My DH is suppotive in that he eats gluten free at home and will occasionally is interested in discussing celiac, but that's about it. Kudos to you! I often wonder what I would do if something happened to me that caused me to not be able to cook, like illness or a hospital stay. I keep some "emergency" rations, but not enough to sustain me for long, and he couldn't help me. He didn't cook pre-celiac, for God's sake. What would I do? That question might make a good topic, come to think about it.

[jmwong982]

What does DH stand for? I think it is important for him to discuss it with you. It is a serious illness. Maybe ask him that same questions you proposed to me..what would he do if you got sick and was unable to cook, or show him how....now is the time to learn..now is the time for him to understand the basics...or maybe get a new DH...lol

[ravenwoodglass]

What does DH stand for? I think it is important for him to discuss it with you. It is a serious illness. Maybe ask him that same questions you proposed to me..what would he do if you got sick and was unable to cook, or show him how....now is the time to learn..now is the time for him to understand the basics...or maybe get a new DH...lol

DH in the context of the last post stands for (dear) or (darling) or... Husband. You will find in other posts that it is an abbreviation for the blistering skin disease we can have, dermatitis herpeformis.

[ranger]

What does DH stand for? I think it is important for him to discuss it with you. It is a serious illness. Maybe ask him that same questions you proposed to me..what would he do if you got sick and was unable to cook, or show him how....now is the time to learn..now is the time for him to understand the basics...or maybe get a new DH...lol

Hmmm. More food for thaught!

[ranger]

DH in the context of the last post stands for (dear) or (darling) or... Husband. You will find in other posts that it is an abbreviation for the blistering skin disease we can have, dermatitis herpeformis.

Sometimes, it seems like these can be interchangeable! LOL

[YoloGx]

Hi Jennifer,

It is easy to make the 24 hour yogurt. Some say to just heat it up in a double boiler so it froths a little on the edges and others say to use a thermometer so it won't go over 170 degrees. I don't have a double boiler, however I do have a very large stainless steel bowl. I then put a small stainless steel measuring cup in the center and rest a 2 1/2 quart stainless steel bowl with the milk in it on top. I used 2 quarts plus one cup whole milk with a cup of cream this time since it was so highly recommended. I also used half of a small container of Greek yogurt without any fillers or starches as the starter--something that was also highly recommended by the scd group here on celiac.com. I then added the yogurt to the heated milk once it dropped to an acceptable temperature (hottish warm but not too hot on the inside of the wrist was my old fashioned approach without the thermometer).

Here's directions from eHow.com:

Open Original Shared Link

The main difference is to have the yogurt ferment 24 hours rather than 6 or 7 hours.

I put it in my old fashioned gas oven since there is a handy pilot light that keeps everything warm. You could also devise a warming box and simply put your yogurt in there with a drop light or small light fixture and drape the top with a towel. If you use the cooler method (which does work) just change the water a couple of times to keep it warm in there--or use it as the box for the drop light. I don't think a small gap in the top will matter. If it does, use the towel. Others like to use a heating pad under the containers of yogurt--with some kind of metal tray in between lifting them up off the pad--try to avoid anything that was used for gluten of course. Use the lowest setting for the heating pad. They then wrap the container business with towels to keep the heat in. The heating pad would also work in the cooler too of course...just keep the lid ajar a little I would think. If that is too cool, then close it.

If the yogurt disagrees with your boyfriend, try making fermented cabbage. I still haven't tried it but have heard its very good and easy to digest.

Good luck tonight by the way!

Bea

PS-of course the easy way is to get a yogurt maker and make sure it goes beyond the 6 to 7 hour setting.