Unresponsive Celiac- Plz Help

[grshockey]

hi,

this is my first post so bear with me.

My friend(female) has celiac disease in which her doctor has deemed it: unresponsive. I really care about her and her well being. I am also very worried because as I'm writing this (1 in the morning), she is currently in alot of pain from it. She says that she was stressed and did that to herself(which I don't fully Belive), but I'm very worried about her because it happens semi-often to her. She actually just fell asleep so I am wondering these things:

1. Is it safe for her to fall asleep while in alot of pain(crying it hurts so much)?

2. Is anyone here in her situation with the unresponsive celiac and has found a way to fight it, or even if they sometimes have the same pain as her?

3. Since the gluten free diet isnt working, does anyone have any tips I can share with her?

Anything is appreciated.

Thank you for your time,

grshockey

[Ursa Major]

How was she diagnosed, with both positive blood work and positive biopsy?

Is she still consuming dairy and soy? Those will often hinder healing, and can actually cause pretty much the same symptoms as celiac disease. If she hasn't done so already, it would be wise to eliminate those two.

How long ago was she diagnosed? Are you sure she is 100% gluten-free? Has she replaced her toaster, wooden cutting boards, colander? Those things can't be cleaned well enough from gluten to be safe to be used with gluten-free foods.

Has she replaced all personal care products containing gluten, like shampoo, conditioner, lip stick, chap stick, soap, lotion etc. with gluten-free ones? If it contains things like wheat germ oil, barley extract or oat bran, it isn't safe.

Is she aware that a lot of sauces contain gluten? For instance, in most soy sauce, the first ingredient is wheat.

Has she checked all prescription medication and vitamins for hidden gluten? A lot of the time the filler is wheat starch. Also, vitamin E can be derived from wheat germ oil.

I hope that together with us here in this forum, we can figure this out. Most doctors are woefully ignorant of celiac disease and the gluten-free diet, and are of very little help.

[ravenwoodglass]

It is fine to let her sleep when she can when glutened. If the pain she is experiencing is in her stomach she may want to try some name brand pepto bismal if she tolerates it. It can help a lot with the pain if it is in the stomach. If she is having intestinal cramping it won't help that a great deal though. If she has D it is best if she can to just let her system clear stuff out.

Ursa has given some great advice that I don't really have anything else to add to. You are a good freind and that is really helpful for us in the beginning. If she does not already visit us here please have her sit down and review some of the topics. There is a lot to learn about living gluten-free, it is so much more than food that there is a real learning curve to it. With a good freind to help things can go much more smoothly. I hope she is feeling better soon.

[ShayFL]

Some people with Celiac disease show no improvement on the gluten-free diet. The condition is called unresponsive celiac disease. The most common reason for poor response is that small amounts of gluten are still present in the diet. Or the damage can also be so severe that it may not heal very well.

Does she eat out? This could be a major source of gluten (even while ordering seemingly gluten-free foods). For instance I have learned some restaurants blanch veggies in pasta water.

Also to facilitate healing, look into Aloe Juice (George's is tasteless and gluten-free as I called), Seacure or Intestive( 4-6 capsules daily) along with Biotin (8-10 mg daily), probiotics (mostly acidophilus but some bifidus too) and MSM. Glutamine if she does not have neuro. issues related to Celiac. These supplements help heal the digestive tract.

But as Ursa says, she should also get rid of soy and dairy ASAP! And prepare all of her meals from home for awhile. Fresh foods: Meats, veggies, fruits, nuts, potato, rice, etc. Simple foods with NO additives in them. Call manufacturers to make sure gluten-free status if uncertain.

[lovegrov]

If she hasn't done so already, your friend should also consider taking probiotics. It could be bacterial overgrowth.

richard

[GFinDC]

Ok, just some ideas to think about here. She might benefit from a small fast, just a day to let things heal up some. Then start on plain rice with some olive oil and salt. Then add some bananas to the rice. She shouldn't drink a lot of water with her meals. Slowly add things that are plain simple foods. Like adding veggies in the rice. Check everything she eats or drinks for gluten or gluten derived additives. The thing is to keep her eating very simple for a little while so her system can take a little time to heal up. Avoid spicy foods too. If she is taking a multi vitamin make sure it is gluten-free. Watch out for dairy and soy also. Yeast bothers me also, so maybe she should avoid that. Then again taxes bother me too but we all know how hard it is to avoid those...

[recyclednew]

Hi,

I have refractory celiac and I experiance a great deal of pain, mostly in the bones of my right leg. I also have iron deficency anemia and they are talking about giving me iron through IV because nothing else is working. Eventually I will need nurishment through an IV too.

For the pain, I take valerin root, (Open Original Shared Link)

which isn't 100%, but it's the only that gives me some releif. My pain is at a 10 all the time but the valerin root takes it down to a 8, or sometimes to a 7 on the pain scale. I'm still in a good bit of pain but it's eased up enough for me to function and it also helps with sleep.

You friend probably falls asleep more so because her body is "knocking her out" to deal with the pain. Just like when I person looses conciousness after a horrific tragedy occurs. It's the defence mechanisum of the body for dealing with pain. Let her sleep it off because if she's in that much pain and you wake her up or try to make her stay awake, she can go into shock, which you don't want!

If it's affordable, you can try acupuncture and massage. They do help a lot but can become a financial burden if your on a fixed income or miss a lot of work because of pain/illness. Many people have had a lot of relief from them though!

Many also claim pot helps the pain, but that is illegal! There are legal alternatives that can be tried although I don't know how effective they would be. Some say yes and some say know. I have tried a few but the smoke is so harsh that I couldn't tollerate it!

I just got some kava to try in tea. Don't know how well that will work but it's worth a try!

Narcotics are too harsh on the stumach and personally they make me feel worse!

When your in that much pain you'll try virtually anything at least once! I practice self hypnosis too. I also experiment with brain wave entrainment. They help some but not as profoundly as I'd like.

It's important to continue a strict gluten free diet! Eating gluten with just make her get a lot worse a lot faster! Try cutting out other common allergins too and check out the acid alkaline balance diet. A mostly vegan diet will help a lot!

Good luck!

hi,

this is my first post so bear with me.

My friend(female) has celiac disease in which her doctor has deemed it: unresponsive. I really care about her and her well being. I am also very worried because as I'm writing this (1 in the morning), she is currently in alot of pain from it. She says that she was stressed and did that to herself(which I don't fully Belive), but I'm very worried about her because it happens semi-often to her. She actually just fell asleep so I am wondering these things:

1. Is it safe for her to fall asleep while in alot of pain(crying it hurts so much)?

2. Is anyone here in her situation with the unresponsive celiac and has found a way to fight it, or even if they sometimes have the same pain as her?

3. Since the gluten free diet isnt working, does anyone have any tips I can share with her?

Anything is appreciated.

Thank you for your time,

grshockey

[chatycady]

hi,

this is my first post so bear with me.

My friend(female) has celiac disease in which her doctor has deemed it: unresponsive. I really care about her and her well being. I am also very worried because as I'm writing this (1 in the morning), she is currently in alot of pain from it. She says that she was stressed and did that to herself(which I don't fully Belive), but I'm very worried about her because it happens semi-often to her. She actually just fell asleep so I am wondering these things:

1. Is it safe for her to fall asleep while in alot of pain(crying it hurts so much)?

2. Is anyone here in her situation with the unresponsive celiac and has found a way to fight it, or even if they sometimes have the same pain as her?

3. Since the gluten free diet isnt working, does anyone have any tips I can share with her?

Anything is appreciated.

Thank you for your time,

grshockey

Check out the original gluten free diet for celiac. It's called the Specific Carbohydrate Diet. Dr. Haas had 100% success with it. Do web search and read about it. It worked for me! Gluten-free is not always enough. Take care and God speed!

[shdubbleorti]

hi,

this is my first post so bear with me.

My friend(female) has celiac disease in which her doctor has deemed it: unresponsive. I really care about her and her well being. I am also very worried because as I'm writing this (1 in the morning), she is currently in alot of pain from it. She says that she was stressed and did that to herself(which I don't fully Belive), but I'm very worried about her because it happens semi-often to her. She actually just fell asleep so I am wondering these things:

1. Is it safe for her to fall asleep while in alot of pain(crying it hurts so much)?

2. Is anyone here in her situation with the unresponsive celiac and has found a way to fight it, or even if they sometimes have the same pain as her?

3. Since the gluten free diet isnt working, does anyone have any tips I can share with her?

Anything is appreciated.

Thank you for your time,

grshockey

I've been sick since before I was even born. When I was born I was extremely small and was very sickly growing up. Literally, I got banned from the hospital I was there so much. They said all of the pain was all in my head. One day I went to the hospital anyways, quit breathing and my heart stopped. When I was 17 a doctor found out that I had a condition that only seven people in the world have. Unresponsive Celiac Disease with Hypersensitivity Disorder. I was going into organ failure due to this not being diagnosed for so long. One of the most severe cases ever diagnosed. It's been 6 years since I was diagnosed. I also have other allergies and could not be helped by a nutritionist because none of them knew what I could possibly eat. I figured this out myself and I'm not an advocate for parents of children with newly diagnosed Celiac disease. I've been considered clinically dead twice, had pain my whole life, continuously am going to the doctor being diagnosed with something new... I have a "mystery illness" as of now that is yet to be diagnosed. I've also had to re-learn to walk twice. I don't want to scare you but that's honestly the worse it can get. Now for the positives. Yes I do have my downfalls and never feel "good" but I can still live my life. I have friends, I'm getting ready to graduate from college with three degrees, I can drive when I'm able to walk, I go shopping and do things just like everyone else but with minor modifications. The part that is worse about it being unresponsive is that there is pain. A lot of pain and there's really nothing that can be done. Even pain killers, not only do they lose effectiveness, but they cause other issues. So really, after telling you all of this negitive stuff, I'm going to get to my point. I'm normally not that negitive about this issue. Really I the best thing for your friend to do, along with sticking to the diet is to be positive. Celiac Disease, especially when it's unresponsive is highly sensitive to stress. Something as little as stress can cause a flair up, an elevated immune response and consequently, your body to start, more or less, attacking itself. Your friend can definitely sleep, as long as she isn't having breathing problems. Just try to help her stay as low stress as possible and that's the best you can do. You're a great friend for being so concerned. =)

[T.H.]

If she's willing, there's something she might be able to try to see if her unresponsive celiac disease is due to gluten in higher amounts than she can handle. That's not always the case, but it's definitely something that she could check on by herself.

Unfortunately, many doctors are not up to date on how much gluten is actually IN gluten free food, so they aren't always helpful in trying to help a person get gluten completely out of their diet. Myself and my daughter are very sensitive, to the point that I started having to call the gluten free companies for everything we were buying, to ask them if they tested for gluten in their products, and if they did, down to what ppm could their tests detect.

Some gluten free food has <20ppm of gluten. Some has <10ppm. Some <5 ppm. if we are on <20ppm, that's the doctor recommended gluten free diet. That also keeps my daughter and I sick as a dog. My daughter can be healthy between 5-10ppm, we think. I have to have less than 5ppm, although we're not sure how much, because the tests don't test less than that. But as a result, I've had to really do some checking on our food to figure out what is safe.

So, something that might help figure out if your friend is sensitive? If she's willing to do the following, for a week or two, to see if this makes her feel better. This is not everything my daughter and I have to do, but it's some of the most basic stuff. If it helps a little, even, it can help your friend know she's on the right track, anyway, yeah?

1. Drop all grains from her diet, including rice. While rice is often a good food for many stomach complaints, it is also often contaminated with small levels of gluten due to modern processing, so it's not so good for gluten stomach complaints, if your friend is very sensitive.

2. Drop nuts and beans from her diet. These are also at higher risk of gluten contamination due to processing.

3. Peel all fruits and veggies. These can contain pesticides and sprays, and come into contact with fertilizers and mulches, that contain gluten. Just get rid of the issue and ditch the part that's contaminated.

4. Toss out any oil - contamination risk due to processing with nut oils and wheat germ oils. Olive oil is the best best, if you're going to try something, because some olive oil companies only process that type of oil. good to call the company on this one.

5. Be careful of salt - some is processed on machinery that processes spices, including some that can have gluten. call the company on this one, too. Any salt that is iodized has corn added to help stabilize the iodine, which adds to the gluten CC risk.

6. Ditch the milk - if she's not healed yet, the dairy isn't so good for her.

If these help, again, at least it gives her a place to start. Basically, to start adding stuff back in, she can call companies, start checking out how much gluten it has, what foods are processed in the same factories, etc...

Give her best wishes from another gal who was just sick all the time on a gluten free diet!

[GlutenFreeManna]

FYI the original post was made in 2008. People gave some good advice though. It's too bad they never came back to update us on their friend.

[T.H.]

aw dang - thanks for mentioning that. I saw the August date and thought it was a little dated, but missed the fact that it was an entirely different year.