Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Celiac.com Sponsor:                                    


Photo
- - - - -

Need Help! My Bro Has Problems


  • Please log in to reply

46 replies to this topic

#1 donteatSAD

 
donteatSAD

    New Community Member

  • Advanced Members
  • Pip
  • 14 posts
 

Posted 08 October 2011 - 03:30 PM

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.
  • 0

Celiac.com Sponsor:

#2 mushroom

 
mushroom

    Mushroom

  • Advanced Members
  • PipPipPipPipPipPip
  • 9,448 posts
 

Posted 08 October 2011 - 03:48 PM

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?
  • 2
Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#3 eatmeat4good

 
eatmeat4good

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,699 posts
 

Posted 08 October 2011 - 04:21 PM

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.
  • 2
Healing is a matter of time, but it is sometimes also a matter of opportunity.
--Hippocrates

#4 rosetapper23

 
rosetapper23

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,361 posts
 

Posted 08 October 2011 - 04:44 PM

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!
  • 1

#5 Jenniferxgfx

 
Jenniferxgfx

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 296 posts
 

Posted 08 October 2011 - 05:05 PM

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. :)
  • 1

glutenfree since 6/2011. sick for 30 years.

borderline blood test, negative biopsy.

SEVERELY sensitive celiac with DH. sensitive to contact and ingestion.

asthma (was severe; improved exponentially after 6/11)

spina bifida & childhood SCI at L4/L5 (possibly complicated by weak bones)

countless fractures and infections.

i once listed over 100 symptoms or conditions that improved or were eliminated after 6/11.

very vegan. and, of course, i've also discovered some other food allergies.


#6 donteatSAD

 
donteatSAD

    New Community Member

  • Advanced Members
  • Pip
  • 14 posts
 

Posted 08 October 2011 - 06:02 PM

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.
  • 0

#7 rosetapper23

 
rosetapper23

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,361 posts
 

Posted 08 October 2011 - 07:28 PM

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!
  • 0

#8 suziq0805

 
suziq0805

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 164 posts
 

Posted 08 October 2011 - 08:22 PM

Maybe consider a new toothbrush too. Maybe that's being too careful, but when I went gluten-free I got a new toothbrush also.
  • 0

#9 ravenwoodglass

 
ravenwoodglass

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 13,793 posts
 

Posted 09 October 2011 - 04:36 AM

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.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#10 krystynycole

 
krystynycole

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 228 posts
 

Posted 09 October 2011 - 11:29 AM

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.
  • 0

Gluten Free since November 2010 and feeling fantastic!

(Mis)diagnosis with IBS in 2004
MSG and caffeine free since 2001

#11 donteatSAD

 
donteatSAD

    New Community Member

  • Advanced Members
  • Pip
  • 14 posts
 

Posted 09 October 2011 - 03:54 PM

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.
  • 0

#12 mushroom

 
mushroom

    Mushroom

  • Advanced Members
  • PipPipPipPipPipPip
  • 9,448 posts
 

Posted 09 October 2011 - 07:26 PM

Can you get him a liquid protein drink like Ensure, wait that probably contains lactose :huh: 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??
  • 0
Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#13 GFinDC

 
GFinDC

    A little farting never hurt anybody... :-).

  • Advanced Members
  • PipPipPipPipPipPip
  • 4,163 posts
 

Posted 09 October 2011 - 09:34 PM

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! :D 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.
  • 0
Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#14 rosetapper23

 
rosetapper23

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,361 posts
 

Posted 09 October 2011 - 10:21 PM

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.
  • 0

#15 Roda

 
Roda

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 2,620 posts
 

Posted 10 October 2011 - 05:05 AM

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.
  • 0

Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.





0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: