Need Help! My Bro Has Problems

[donteatSAD]

Hi, starting on Saturday the 24th By brother started feeling some stomach pains in his upper belly, then followed by nausea. Af first we thought food posioning or a a flu bug or something like that. about 4 days later we took him to the ER because he wasn't keeping any fluids or food down at all, just throwing it all up. Also his belly pain he described as intense, enough to keep him up all night several nights. The ER room was a joke telling him he was constipated. But we went back a few times because he couldn't handle the pain, and couldn't keep the pain pills down. Also he needed IV so he wouldn't dehydrate.

Then about 12 days after the initial syptoms he started getting a nasty rash, then the docs started taking it more serious finally.

We finally gat a 'recommended' gastroligist to look down his stomach, and he said 99% certainty that he has celiac. This is the reason I am posting in this forum. He stayed away from wheat and started feeling better in the hospital finally smiling and commenting on how he finally feels like fluids are going down. We were all so excited about this and not at all stressed about giving up wheat for life, because he wanted to anyway, being into health.

The day he got out of the hospital he was feeling great, the gave him a steak in the hospital and he ate it all. Then he ate some larabars. Then he ate some organic clover chocolate milk(called the company and they assured it to be gluten free). Then he ate a rotissirie chicken that I really think was gluten free. Then some tacos that night that we made sure to be gluten free also. Before he ate the tacos he said he felt a little bit of nausea so he took it easy only eating 1 taco. FWIW he ate like 1 leg of chicken with a bite of breast and 1 cup of choco milk.

That night later all the syptoms came back, except for the rash. Really intense stomach pain and bad nausea. Thowing up all the fluids and food he ate.

Now my theory is that he shouldn't have ate solids because his asphagus was swollen, then throwing up made it worse. Now it's 2 days later and he is in the hospital with stomach pain and theyr'e running more tests, even though the main doc(who don't work seekends so isn't around) is sure it's celiac.

I would appreciate your guys thoughts. I may have missed something so ask any question that may help your analysis.

[mushroom]

The rotisserie chicken is the most likely gluten culprit. Most of them are injected with a broth base; Costco chickens are safe, those are the only ones I buy. Are you certain that the chicken was gluten free?

[eatmeat4good]

I'm so so sorry he is so sick...he was doing great to be eating all that food but even one tiny mistake with gluten can make you sick as a dog and make you think you are dying...it's that bad. I agree with Mushroom that it was probably gluten and I never eat rotisserie chickens anymore because you just can't be sure even if the seasoning is fine...who touched the chicken? Did they touch it after they pulled the fried chicken out and served it? They wear gloves...that's great...but they usualy don't think a thing about touching gluteny foods then touching rotisserie chickens. It's only habit to think of germs...not gluten contamination. If your brother is Celiac like the Dr. thinks then you will have to be really really careful about cross contamination. Read and learn everything you can about how to make the environment safe...and how to avoid traces of gluten. It's really hard, but so well worth it in the end. I hope your brother is okay, and he is very lucky to have such a caring and concerned sibling. Best of luck to you both...or you all.

[rosetapper23]

The only gluten-free rotisserie chickens I can find are at Costco or Whole Foods. I read an article a couple of years ago that stated that these are the only mainstream gluten-free rotisserie chickens on the market--all the others are marinated with sauces containing gluten. In the very beginning when a person goes gluten free, it is best to eat only natural foods--nothing processed, in a can, box, or bag, nothing frozen, and especially nothing with sauces or seasonings. What your brother should be eating for at least the first three months in order to help his gut heal are meats, fruits, vegetables, rice, eggs, potatoes, and nuts. If he can tolerate dairy, that's fine, too. However, he should avoid soy and especially iodine, since he breaks out in a rash. The rash that celiacs get (Dermatitis Herpetiformis) is activated by ingesting BOTH gluten and iodine. Iodine can be found in iodized salt (your brother can buy non-iodized salt anywhere), seafood, dairy in some locations in the U.S. (organic is usually fine), asparagus, and salted foods that are purchased outside the home. Make sure that your brother's condiments (like mayo, mustard, etc.), peanut butter jar, and butter are labeled and placed in areas where only his food resides. He needs a new toaster, too. Because the rash is involved, he should also switch to a gluten-free shampoo because it can wash onto his lips in the shower. He should also avoid kissing anyone on the lips who is wearing lipstick or chapstick. Gluten can also hide in seasonings, can be used in the packaging of frozen hashbrowns (so, always ask at restaurants if the hashbrowns are fresh). Please have him be careful about chili powder-Gebhart is gluten free, though, and so is Lee & Perrins Worcestshire Sauce. Lay's and Granny Goose chips are gluten free, but he should visit their sites to make sure about which varieties.

Also, supplements and medications can contain gluten, so your brother will need to check the bottles or even call the manufacturers directly, since rarely do the manufacturers list gluten as an ingredient (they aren't required to). In the future, every time he is given a prescription for a medication, he needs to have the pharmacist CALL the manufacturer before filling the prescription.

I'm sure others will chime in with other suggestions....but the main gist of my post is that your brother needs to give up all prepared foods for a while until he gets a handle on his health. If he wants to eat gluten-free bread, the best brands are Rudi's, Udi's, and Against the Grain (baguettes), and these are usually found in the frozen-food sections of specialty stores and some supermarkets. The best pastas are made by Tinkiyada and Glutino, and Glutino and Against the Grain make some pretty good gluten-free pizzas. Lastly, L-Glutamine facilitates healing of the gut, and many celiacs take it for a while to see if their symptoms improve.

I hope your brother is feeling better soon!

[Jenniferxgfx]

What about milk? Celiacs often can't digest milk till they heal (sometimes never, too), because of the damage to the small intestine. Also milk tends to be high in iodine, which could aggravate dermatitis herpetiformis, or dh, which could be the rash he's getting.

He might be better served having less pre-made food and more whole foods (cook the chicken yourself, for example, and make tacos at home with known gluten-free ingredients) just because it doesn't take much carelessness for something prepared outside your home to come in contact with gluten. Home cooking should be done with dedicated pans and utensils-- I've been glutened from our old cutting board and old pans I thought I cleaned well enough. (scratched stuff never gets clean).

You're really sweet for helping your brother out. He's really lucky to have you to look out for him.

[donteatSAD]

Thanks for the responses. I would like to add a few things about his siuation.

-He has been taking Dr. mercolas melatonin supplement to be able to fall asleep. The website says this product is 'gluten free'

-The chicked was from a local natural food co-op.It's a Smart Chicken.

Ingredients are smart chicken,lemon juice, garlic, Thyme, Sea salt, Pepper, Olive oil, sugar.

I thought this looked pretty safe but who knows. The tacos were homemade, so it was likely the chicken.

When he gets better I am going to reccommend a strict fruit and vegetable juice diet for a few days.

[rosetapper23]

It may have also been any taco seasonings you may have used--seasonings are oftentimes "cut" with flour to give them a powdery texture.

Also, in addition to vegetables and fruits, your brother definitely needs meat and fats. With celiac, we have trouble digesting fat-soluble vitamins (A, D, E, and K), and if you feed him only carbs, he won't be able to absorb his fat-soluble vitamins that he may be lacking. Also, straight juices (regardless of whether they're organic) raise blood-glucose levels sky high, causing a huge rush of insulin, which can be very damaging. If your brother wants to return to health, he (and you) might consider reading, "Primal Body, Primal Mind," which is the diet that has finally healed me and others at this site.

Your brother is very lucky to have you!

[suziq0805]

Maybe consider a new toothbrush too. Maybe that's being too careful, but when I went gluten-free I got a new toothbrush also.

[ravenwoodglass]

Thanks for the responses. I would like to add a few things about his siuation.

-He has been taking Dr. mercolas melatonin supplement to be able to fall asleep. The website says this product is 'gluten free'

-The chicked was from a local natural food co-op.It's a Smart Chicken.

Ingredients are smart chicken,lemon juice, garlic, Thyme, Sea salt, Pepper, Olive oil, sugar.

I thought this looked pretty safe but who knows. The tacos were homemade, so it was likely the chicken.

When he gets better I am going to reccommend a strict fruit and vegetable juice diet for a few days.

The just fruit and veggies is not a real good idea. For one thing if he is not used to having a lot of fiber in his diet that could cause problems. He also needs a well balanced diet with protein. Better to go with fresh plain meats, veggies, rice or potatoes etc. Do take the needed precautions in the kitchen for him. He needs a new toaster, strainer for gluten-free pastas, replace scratched non-stick pans and wooden cutting boards and utensils. We also can not share condiments, butter, nut butters etc. he will need ones that are just for him. We have to take care not only that ingredients are gluten free but also that the items are prepared in a gluten safe way. Even a crumb or a dusting of flour will make him ill.

Also since he is diagnosed it is now time to get all of his first degree family members tested. That includes you and any other siblings as well as your parents. It needs to be done even if they don't seem to have symptoms.

[krystynycole]

Have you thought about casein? Many celiacs cannot have casein either. Also, some people cannot have nightshades or corn either. Corn is in EVERYTHING just like gluten. It is even on many fruits.

[donteatSAD]

The rash that celiacs get (Dermatitis Herpetiformis) is activated by ingesting BOTH gluten and iodine. Iodine can be found in iodized salt (your brother can buy non-iodized salt anywhere), seafood, dairy in some locations in the U.S. (organic is usually fine), asparagus, and salted foods that are purchased outside the home.

Wow last night I just realized why his rash was sooooo bad then. He got a cat scan in the ER, so they loaded high amounts of iodine in his blood. Wow, crazy. This explains why 24 hrs after that he had such bad rashes that they looked like open bloody sores

The just fruit and veggies is not a real good idea. For one thing if he is not used to having a lot of fiber in his diet that could cause problems. He also needs a well balanced diet with protein. Better to go with fresh plain meats, veggies, rice or potatoes etc. Do take the needed precautions in the kitchen for him. He needs a new toaster, strainer for gluten-free pastas, replace scratched non-stick pans and wooden cutting boards and utensils. We also can not share condiments, butter, nut butters etc. he will need ones that are just for him. We have to take care not only that ingredients are gluten free but also that the items are prepared in a gluten safe way. Even a crumb or a dusting of flour will make him ill.

Also since he is diagnosed it is now time to get all of his first degree family members tested. That includes you and any other siblings as well as your parents. It needs to be done even if they don't seem to have symptoms.

Well I realize that a long term diet of just fruits and veggies isn't very good for anyone and could be worse for a celiac, I meant just juices for a few days. He got an X ray today and they said he is so swollen that no food whatsoever good get down his stomach. So if meat can't get down his stomach. it's probably not a good idea.

Also, I posted in this forum because the doctor said he didn't need to see the blood tests because he saw the celiac and said he was 99% sure. My question is, is it normal or heard of to be this sick from gluten. I mean extreme pain for 2 weeks, extreme swelling, to the point he can't sleep. Also one of the ER doctors said they have never hospitalized someone from Celiac. This really really worried my brother because he is praying his problems are celiac and scared to death of it being something else.

Thanks for the help guys, much appreciated, some great forums here.

[mushroom]

Can you get him a liquid protein drink like Ensure, wait that probably contains lactose Go to a pharmacy and ask if they have a lactose-free protein drink, or make him one at home from fruit juice and either hemp or whey protein powder with some sweetener like Stevia added. He needs nutrition but if his GI tract is swollen it obviously has to be liquid. He needs both hydration and nutrition.

Good luck on helping him recover.

You say you have been taking him to the ER; does he have a primary care physician who can assume control of his health and help you out??

[GFinDC]

People get widely varying symptoms from glutenings. They are kind of all over the place. That's one reason celiac is mis-diagnosed so much. So, yes, your brother's symptoms could be from celiac with exposure to gluten. In time his digestive system and his body can stabilize when he is 100% clear of gluten for a while. It is also possible he has an allergic reaction in addition to celaic disease, which is not super unusual either.

The sooner he switches his diet to a whole foods diet and lays off the pre-made foods and restaraunt foods the sooner we wil be on the path to recovery. There is a lot to learn about eating gluten-free with celiac disease or gluten intolerance. The simplest way to start is whole foods cooked at home. That way if he gets sick he knows what was in the food he ate that could have caused it.

The kinds of foods to buy at the store are foods with 3 or fewer ingredients on the label. And none of those ingredients should be chemical preservatives or food colorings. Let the chemicals stay in the chemical factory, and not in your body. Unless your are an artist, and some chemicals in the paints can be pretty handy! But you shouldn't eat those either.

The fewer different foods eaten each day the fewer suspects to eliminate from the food detective mystery. So a simple diet is very helpful in that way also.

There is a whole section of the forum on dermatitis herpetiformis (DH), where you might find lots of helpful info on rashes. A rash dosen't have to be DH, but it could be.

But there is no instant cure to celiac, it just doesn't go away. Only time and a strict gluten-free diet will help. Plus some extra vitamins, some probitoics, and enzymes, and learning to cook simple food. Branching out to pre-made, processed foods should be done slowly and methodically. There are processed foods that work fine for many people though.

It's a whole new world of healthy food and eating right that awaits your brother. And for him eating right is eating gluten-free.

[rosetapper23]

That's interesting about the swelling. I'm wondering if the iodine may have caused it. The only time I swelled up like that was when I went to the emergency room with an allergic reaction to a new medication...and it's possible that I ended up somehow getting iodine into me. I thought my insides were going to burst, and it took several weeks before my bruised organs began to feel better. Because my reaction to iodine can be so severe, I wear a medical ID bracelet at all times. I nearly died earlier this year when a nurse swabbed me with Betadine (which is mainly iodine) after a surgery because she didn't know that Betadine contained iodine. I ended up with scalded skin syndrome and began to go into anaphylactic shock--then I got covered with an itchy rash that lasted for four weeks, and my skin peeled off in sheets. When people discuss Dermatitis Herpetiformis, they usually just discuss the gluten aspect--but, really, the iodine has always been the largest threat for me.

My friend's daughter spent a week in the hospital, and she was in terrible pain--and it turned out to be celiac.

No gluten...no iodine...and your brother should get better soon. Many people spend years in terrible pain before the doctors finally figure out what it is (more like, the patient finally figures out on his/her own). I'm glad you brother found out what was ailing him before he spent a lifetime in Hell.

[Roda]

When he is able to take in food, it may be better to eat a little more bland with minimal seasonings maybe stick to non iodized salt and pepper. His poor insides need time to heal.

[donteatSAD]

Hey guys. Thanks for the responses. I have an update, a not so good one. Yesterday my brother got out of the hospital and again was feeling better. When he was in the hospital they were giving him some soup and the drink ensure.Also milk then they gave him some chicken breast. He seemed to take it down pretty good. When he got out of the hospital He had a burger patty(just burger) with some raleys natural mild cheddar cheese. Also a little organic muir glens ketchup. I advised against the cheese and ketcup, but he was saying how there was way more ingredients in what the hospital was giving him so he would be fine with it. Well he got really nauseated and sick again, with stomach pain, then ended up throwing all his food up.

Now Im wondering if he was contaminated with gluten or his intestines are too swolen to eat. The hospital said his swelling was way down, and he was on protonics and some steroid to reduce swelling. Also Im wondering if maybe Iodine is still a problem from the CAT scan he got over a week ago. My suspicions are the cheese being coated with gluten somehow. The ingredients in the cheese are cultured pasteurized milk, salt, enzymes, artifcial color.

It's a crappy situation but the doctor said he was perplexed and didn't have much to say. The doctor is Dr. Danny Yen in Auburn Ca. So my brother just went to the ER again, and basically the only reason he is going is for pain and nausea relief.

So do you guys think he is contaminated with gluten or there is a blockage in his intestines. Maybe the barbecue is contaminated with gluten or more likely the cheese( I contacted the company that sells the cheese and there getting back to me on whether it's gluten free.I just don't see what would have gluten in it, maybe the enzymes?)

Thanks.

[kareng]

Cheese is not coated with wheat. sometimes corn starch but wheat would get sticky and make the cheese stick together. If you have cooked stuff on the grill that had gluten, that could certainly be a problem. Ketchup has vinegar in it. It should be gluten-free but I find vinegar to be irritating to the stomach.

The villi tips in the small intestines are the part that digest dairy. If those are damaged, its impossible to digest dairy.

[donteatSAD]

The villi tips in the small intestines are the part that digest dairy. If those are damaged, its impossible to digest dairy.

Isn't this true of all foods?

Also I wanted to add that his blood test came up negative for celiac while his biopsy came back positive. Are blood tests not so accurate? If his biopsy came back positive does this guarantee he has celiac?

EDIT: Another thing. If it's possible to get gluten contamination from a barbecue that has had a piece of bread on it, it's more likely that he was cross contaminated by the Muir Glen Ketcup or the cheese. I called Muir Glen and they said they don't write gluten free on the label because there is noodles in soups that are made at the same facility. Even though their ingredients have no gluten. Or it could have been have been something he ate at the hospital, or iodine in one of his medications making his intestines swell. How likely are any of these possibilities?

[ravenwoodglass]

Isn't this true of all foods?

Also I wanted to add that his blood test came up negative for celiac while his biopsy came back positive. Are blood tests not so accurate? If his biopsy came back positive does this guarantee he has celiac?

There are false negatives with both blood and biopsy but when one or the other is positive then chances are extremely good that he has celiac.

He will need his own condiments, butter, and if you do more grilling for him it should either be done on a grill that is dedicated to gluten free food or on foil. He will also need his own toaster, a new strainer for his gluten-free foods, and for you to replace any scratched non-stick cookware and wooden untensils.

[donteatSAD]

Now a New doctor thinks he might have a blockage of some sort causing him all this pain. The pain has gotten worse each time he has one of these 'episodes' and it's always after eating food. So he might have Celiac plus a blockage. How likely is it that he can just eat loafs of bread one day then 2 weeks later get severe stomach pains and nausea from cross contamination? But he has always thought he had Celiac because of the way his body reacted to gluten, he even went and got a blood test a few years ago that came back negative, just like the recent one.

[rosetapper23]

Normally, barbecues have gluten on them because of barbecue sauces that have been used in the past, not just because bread may have been toasted on them. I NEVER barbecue food on someone else's barbecue; rather, I place my meat or vegetables on foil before placing them on the barbecue.

When there's a negative blood test and a positive biopsy for celiac, my understanding is that the biopsy is the gold standard...and your brother can assume he has celiac. It's true that he seems incredibly ill at the moment, so perhaps a blockage does need to be explored. However, as I stated earlier, my friend's daughter (who I had suspected had celiac and had begged her mother to have her tested--but, of course, she didn't) didn't even have any digestive problems before she suddenly became extremely ill with terrible stomach pain and nausea. She was in the hospital for a week, and after she checked out, her mom said that she'd become super-sensitive to any gluten at all. After she shampooed her hair with a shampoo that contained gluten, she broke out in Dermatitis Herpetiformis all over face for the first time. It seems as though some people reach a point where gluten sensitivity becomes a crisis.

Your poor brother--I really do hope he feels better soon. He probably needs to eat just vegetables (except asparagus because of the iodine content), fruits, and meats that have been roasted with NOTHING else.

[donteatSAD]

Update:

Another dissapointing update. He is still in the hospital and was supposed to be released yesterday or today. He had a problem with the IV and developed DVT.A deep vein blood clot. Then this morning at 4am he was having real bad stomach pains and threw up a few times.

The last two days he started eating, and eating a decent amount. He was eating chicken breast, white rice cooked with nothing except water, fruit, and had some potatoes cooked on tin foil. He got off the IV yesterday and we thought he was doing so much better. But he never had any real bowel movements.

As far as the blood clot is concerned, I think the hospital is really at fault here. It seems to me that someone malnourished and with an immune system problem(Celiac affects the immune system, right?) should not have an IV in their arm for three days, in the same spot.

The thing im worried about with his stomach is I am thinking it's something in his medication that is making him sick. I think it's likely not in the IV version of the drug(s) but something in the pill form. I think this because it seems when he gets off the IV he is feeling good, but then after a about a day and a half of taking the pills he starts to get sick.

Im so worried because I have never trusted doctors/conventinal medicine and and don't now either.

[pricklypear1971]

I'm sorry this is happening and hope your brother improves soon.

Get a hold of his meds and take them to a pharmacy and find out what it is and have them call the manufacturer and find out if contains gluten.

[donteatSAD]

I'm sorry this is happening and hope your brother improves soon.

Get a hold of his meds and take them to a pharmacy and find out what it is and have them call the manufacturer and find out if contains gluten.

Good idea. I have already looked up some of his meds. My findings were kinda confusing. I found some stories(including some off this site) of celiacs negatively affected by certain meds that claim to be gluten free. Also I would see one site list a drug as gluten free, then another have it on their 'suspect list' and there from the same mfg. One of the meds(prendisone)my brother is on I saw had about 12 'other ingredients' this made me think "hmmmmmm if they say that he can't put a little salt or pepper on his chicken breast the why the heck should he be taking all these meds with all these toxic chemicals in them?" Im just talking about the 'other ingredients' without even getting into about the drugs themselves. Then on top of the stuff like prendisone which has alot of 'other ingredients' that don't seem too safe, there is Norco. I swear eveytime he takes one of these he throws it up in like 45 minutes, then they'll try and give him another the next day or something, it's rediculous. Then you got simple stuff like stool softeners with a main ingredient of "sodium something", several food colorings and 'edible ink' plus others. I mean who knows about this crap? He is probably getting a rediculous amount of fillers and 'other ingredients' through these pills that maybe aren't in the liquid form that he receives through IV. But meanwhile were told not to eat salt? Im not saying he should eat salt, but I think you understand my point.

[pricklypear1971]

Ingredients vary by manufacturer, which is why it can be difficult. You must know the manufacturer.

Prednisone is nasty stuff. I was on it. It may be necessary in the short term, but evil long term.