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Need Help! My Bro Has Problems
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47 posts in this topic

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.

I am awaiting an official diagnosis but I and my GP both believe I have Celiac and DH. I am 38y/o and always eaten gluten - I was never a great fan of bread/cereal/pasta but never thought much of it. I've always been bloated, up&down with constipation/diarrhoea and felt yuck - I thought it was normal. Last year I went to work at a bakery. It was one of the best jobs I've ever had but with hindsight I got sicker and sicker as the months went by. I put it down to my pollen allergy (combined with the breaking of our long Australian drought .. go figure). I had a few days off with another nasty sinus infection (in bed for three days, lots of asthma treatment etc), went back to work for a 6 hour shift. At first I seriously thought there were mosquitos biting my ankle but after 6 hours I was covered in it.

Three months later I know that gluten is the problem and recently even seem to feel the difference between a heavy iodine -versus- gluten dosing. If I get the gluten and iodine together I end up with it from knees to ears. :blink: Strangely my ankles don't seem to be effected any more :blink:

I feel loads better now than I have in a long time but I have made many mistakes the past few months. Interesting too that here in Aus we are well into the spring/pollen season and I don't have any hayfever symptoms (which I've had for the 10 years I lived in Canberra - a known trouble spot for hayfever).

Take good care of your brother - he needs your help and support. My mother told me that my issues aren't serious enough to be Celiac and it hurt.

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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.

The hospital pharmacist should be able to check all his meds to make sure they are gluten free - you shouldn't have to be doing it. Can you have a talk with him?

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The hospital pharmacist should be able to check all his meds to make sure they are gluten free - you shouldn't have to be doing it. Can you have a talk with him?

Well the doctor said he would do this but we haven't heard from him. Also like I said in my last post if they say he can't have any salt or spice on his food but he can have loads of fillers in the meds and sodium in the stool softeners.

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Well the doctor said he would do this but we haven't heard from him. Also like I said in my last post if they say he can't have any salt or spice on his food but he can have loads of fillers in the meds and sodium in the stool softeners.

Yes, sometimes the "practice" of medicine doesn't make much sense. Like when I was on a low salt diet and they did two colonoscopy preps on me within a week! Man!! the sodium I got from those things bloated me up so bad, my ankles have never been the same since. At the time I didn't know what they were giving me was practically pure sodium of various kinds :blink:

I would ask to talk to the pharmacist directly, if it were me.

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For starters, your brother's doctor should take him off Norco. It sounds as though he's having an allergic reaction to it--not necessarily, a gluten reaction. Many of us with celiac tend to have trouble with allergic reactions to medications. We can also react to adhesives, cleansers, and products that contain iodine (like Betadine). Be sure that they are NOT swabbing your brother with iodine or Betadine, since these would harm a person who has DH.

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Update: The Medical system has failed us again. Giving them the benefit of the doubt, they are atleast incompetent. He was doing better until last night he got some stomach cramps, but not as bad as it was before. I don't know if it's not as bad because he just ate less or it's because his stomach is doing better. His doctor is double speaking to the point it's so ridiculous. He is blaming me and my family for bringing him plain chicken and fruit smoothie and saying he needs to only eat the hospital food, but they are feeding him chicked with gravy all over it(obv he's not eating it). He is an absolute idiot. Now he's downplaying his case and saying his stomach cramps are mental, after the other day saying his case was really bad.

They haven't helped one bit except for pain relief. They have caused deep vein blood clots, tried to fear monger us into getting him onto a 7 month blood thinning program saying that there is no chance that the blood clots will go away soon and that he's 50/50 to die(No im not kidding) He refused treatment to see how it develops and it was gone the next day. Then the doctor said 'I wanted to see if it would go away soon, and im glad it did'. incredible double speak after saying no way it can dissolve so soon. The whole time they have been trying to feed him stuff that they say he can't eat, it's truly ridiculous. Plus he has had nurses that were incredibly rude and disrespectful saying he's in the hospital for constipation which isn't true and now the doctor is being a piece of crap.

Were pulling him out of their care to heal his stomach ourselves. Were getting him on some pro biotics(Dr. Mercola's probiotics) and having him eat small amounts of food, strictly fruits, vegetables, and plain meats. We juiced him some vegetable and fruit juice but im worried that may have upset his stomach a little, because drinking some myself even upset my stomach a bit. The night after he drank some of the juice he got cramps, also he said that the juice came out as diarreah really quickly after eating it, so he's not sure he even is absorbing any of it.

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How maddening!

Sometimes raw fruits and veggies are hard to digest.

Maybe try Cream of Buckwheat, applesauce,plain chicken broth, baked sweet potato or butternut squash. Those are supposed to be easy to digest. No cinnamon in the applesauce or butter on the potato. Just plain, maybe salt. Just for a few days. There is also cream of rice cereal. Apple juice or gatorade.

After a few days, add in plain boiled or baked chicken, rice cooked in chicken broth, potato, cooked carrots. Kind of boring, but he sounds like he feels horrible so that probably isn't too important yet.

Good luck.

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You might try giving your brother L-glutamine, which a number of celiacs take (in a smoothie) to help their guts heal. Also, I went to see an integrated medicine doctor (practices both allopathic and homeopathic medicine) because I had cancer, and he told me he could make me feel as though I didn't even have celiac. I didn't believe him, but after taking what he recommended, I felt "normal" for the first time in many years. I took Metagenics UltraClear Sustain Medical Food (which contains L-glutamine) and Probiotic Pearls. These two products made all the difference in the world.

As for what to feed your brother, please do NOT attempt to feed him vegetables and fruits that have been "juiced." That makes even people without celiac ill. It's like dumping a cup of sugar water down his throat....so please switch to giving him just water or tea. Foods like rice, potatoes, bananas, fresh vegetables, and meat should help him to feel better. Also, because he's had so much diarrhea, you might consider giving him Pedialyte along with regular water. I'm so glad that you're there for him--I can't imagine what would have happened if you were not there to advocate for him. Hospitals are filled with idiot medical practitioners--and sometimes I feel as though they're better at killing patients than healing them.

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Update:

Now he is at home suffering. He is claiming that his pain now is like day 1 when this all started. When he was in the hospital they had him on a ton of dilaudid. The nurse even said that he was on the maximum that is allowed at the hospital. He is going through extreme pain and earlier was having chills. I am wondering if maybe dilaudid withdrawals could be upsetting his stomach, causing his stomach to feel as if he ate some gluten.

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I'm sorry for what you and your family are going through. It sounds like a nightmare and I hope your brother gets some relief ASAP. You sound like you really have a handle on taking care of your brother and keeping him as gluten-free as possible. I just wanted to add that you may want to make the entire household gluten-free right away. There are numerous threads here about how to go about it. That way you can be sure that he isn't getting cross contaminated.

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He certainly could be going through withdrawal from dilaudid. Did they send him home with any pain medications? Have you tried giving him Pepto Bismol?

I agree with Kareng that you should give him only cooked, easy to digest foood, any juice should be watered down, nothing raw or with skin which is hard to digest.

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It sounds like you are on the right track. I want to mention that homemade soups and probiotic foods can be very helpful and healing. Stock is full of nutrients and is easy to absorb. Our family is using the GAPS diet, which progresses in stages as your gut heals. I've got lots of blog entries about it on the blog linked from my profile. The newest entry has an explanation of how to do GAPS stage 1 as well as links to previous posts with more resources.

I hope he feels better soon!

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I'm sorry for what you and your family are going through. It sounds like a nightmare and I hope your brother gets some relief ASAP. You sound like you really have a handle on taking care of your brother and keeping him as gluten-free as possible. I just wanted to add that you may want to make the entire household gluten-free right away. There are numerous threads here about how to go about it. That way you can be sure that he isn't getting cross contaminated.

Yeah Were basically all gluten free now. We definitely don't bring any gluten into the house anymore, I haven't ate gluten in over a week, and also my dad cut it out completely 4 days ago.

He certainly could be going through withdrawal from dilaudid. Did they send him home with any pain medications? Have you tried giving him Pepto Bismol?

I agree with Kareng that you should give him only cooked, easy to digest foood, any juice should be watered down, nothing raw or with skin which is hard to digest.

They didn't send him home with any pain medication. He was having such bad chills from the dilaudid withdrawals that he was convulsing and freezing cold in a 80 degree house under blankets. He probably should have been weened off because he was on weeks of very high dilaudid doses.

Were baking him some skinned apples to give to him. Also He wanted to try a high quality whey protein that is gluten free because he wants some protein. What do you guys think of this idea? Is it ok since it's basically lactose free.

It sounds like you are on the right track. I want to mention that homemade soups and probiotic foods can be very helpful and healing. Stock is full of nutrients and is easy to absorb. Our family is using the GAPS diet, which progresses in stages as your gut heals. I've got lots of blog entries about it on the blog linked from my profile. The newest entry has an explanation of how to do GAPS stage 1 as well as links to previous posts with more resources.

I hope he feels better soon!

good idea. Il check out the GAPS diet. Also he recently started taking (Dr. Mercola's)probiotics.

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Whey protein sounds like a good idea--just make sure it isn't soy based. A lot of celiacs can't tolerate soy. In addition to protein, he also needs healthy fats. Will he eat an avocado?

I'm sorry to hear that he's having problems withdrawing from Dilaudid. That stuff is terrible! I wouldn't be surprised to learn that it's at the root of his continuing pain and discomfort. I really keep hoping every day to read that your brother is feeling better.

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Update:

Basically what's going on is if he's not on the pain medication(dilaudid specifically, morphine or any othersdon't work) he can't eat without getting sick. If he's on the pain medication he can eat. But the pain medication is causing problems like constipation. Really crappy situation. Im now wondering if he might have stomach ulcers causing a lot of problems.

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Update and Questions:

By brother is still in the hospital and luckily he has felt better the last few days. But throughout the last 30 days he's been up and down several times so it's not too comforting. We switched hospitals and doctors in the last 5 days. The previous gastro doctor was so sure it was celiac right when he looked down his throat with the camera then he said that the biopsy confirmed it. Now at the new hospital the gastro doctors seem to be questioning the diagnosis from the previous doctor. The aren't saying it's not celiac but they are saying it could be something else, and they have seen some of the results from the previous doctor. They did another scoping procedure with the camera and took many more biopsys to test for several different things. These aren't back from the lab yet.

Now my question is...How likely is it to be celiac when he hasn't ate gluten in about 3 weeks and isn't recovered yet? Also note that he has blisters scattered all around his intestines, not only in his esophagus.

I would appreciate any opinions on this. Thanks.

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I don't know how likely. I haven't seen all his tests or anything but....it seems likely he has something else. He may also have Celiac. Encourage him and the docs to look for more than just Celiac. I don't think Celiac usually causes blisters in the esophagus. Good luck.

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chocolate can upset ur stomach, milk can definitly upset your stomach. just because one has damaged vili doesnt necessarily mean u have celiacs disease. has he taken an antibiotic lately? could be the bacteria in the gut. does he have burning sensation sometimes after he eats. indigestion can make you throw up and feel horrible. his stomach could be inflamed. what works for me is hot 100% ginger tea or even hot water warmed in a microwave. settles the stomach. stay away from sugared juices and carbonation drinks. dont give him soup because i found out the hard way alot of soups contain wheat and salt. salt irritates the stomach. absolutely no chocolate milk. very bad idea. this whole gluten thing confuses the heck out of me but ive found a few natural remedies that have worked for me because there have been alot of times where ive felt so sick for 4 days straight and i felt like puking my guts out but i chugged pepto bismol because i try to avoid puking. try the hot water with very bland rice. no salt no dairy CHICKEN is a heavy meat and if your stomach is swollen u shouldnt eat it for it causes indigestion (and it definitly has for me) to me it sounds like it could be crohn's disease too. and what i just said would definitly work for any stomach ailment. rice and steamed vegetables and water only to drink. i dont even know if i have a gluten allergy either the doctors just told me my biopsy showed that i have damaged vili which is usually caused by gluten intolerance but i got it right after i took an antibiotic and had a nasty reaction to it and antiobiotics cause damage to the gut. hopefully he feels better

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actually blisters can be in the small intestine with celiacs disease. its uncommon but possible

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Whey protein is from milk which he may not tolerate right now if it's indeed celiac.

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if there is a kmart by u they sell loafs of gluten free bread. u should put him on the "brat diet" (my mom calls is that) its toast, applesauce, rice, herbal tea (no coffee) etc. stay away from heavy meats such as chicken, definitely ground beef, and steak. i found fresh fish with boiled spinach to be helpful and eggs for protein. my symptoms come and go even if i follow the diet so i always eat healthy and light. unfortunately i look like a tooth pick but i been looking up Chinese and Asian recipes because alot of theirs involves recipes with rice and i never see them have stomach problems lol. but potatoes can also be really heavy and hard to digest when your stomach is on fire. id suggest talking to a nutritionist and they have those at hospitals so she can make him a food plan asap becuase the nutritionist would know exactly how to help his stomach. the hospitals have become crap i went to 12 different ones before someone finally had an idea what was wrong with me! see several doctors so you can get different opinions.

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    • Squirmingitch, I forgot to mention best of luck to you during the storm! I hope you are safe and that your home isn't impacted too badly! I'm on the coast in SC so we will see some storms from it but nothing near as bad as what you will have. Take care and good luck.
    • SquirmingItch, I really appreciate you gathering info for me! To answer your questions, yes, I'm on Dapsone now and have been on it for about 4.5 weeks. I have been gluten free for the same amount of time. I started on 50 mg of Dapsone which didn't seem to help much. I spoke to my doctor about it and after about a week she raised it to 100 mg. Since then I did notice a huge improvement in both my rash and itch. I no longer have any active rashes and my itching isn't completely gone but it's very minimal. I have been getting weekly blood tests done and will soon be moving to monthly.  My DH skin biopsy was done before the gluten free diet and Dapsone. My results for the skin biopsy came back as inconclusive, but even with those results, my doctor was convinced I had DH. I specifically asked her about the fact that she took the biopsy directly from the lesion rather than next to it and if that affects the result. Her explanation was that if it's a fresh enough lesion that isn't scratched, there should be IgA antibodies present. But she said that an inconclusive result isn't surprising because the IgA antibodies come and go from the skin so quickly that it can be very difficult to get a positive result, even in someone who is positive.  That's when she decided to run the celiac blood panel on me. And even though those results came back positive for the deamidated gliadin and negative for tTg, she still is very convinced that I have DH. I am happy that my doctor seems to be certain, but I would just feel better if the results were more definitive. The one other thing I am waiting on is I have been asked to attend grand rounds at the local academic hospital in 2 weeks. I guess grand rounds is where all of the academic dermatologists and dermatopathologists get together to review certain complicated cases. They will meet with me, review all of my pictures, biopsies and blood tests. My situation has been so complicated so they asked me to come. I am hoping maybe then I will get some more answers. 
    • It sure is, it really is. 
    • shellyb, I have info. for you & you may yet be able to get an official dx from your dermatologist as she sounds like she would be willing to learn. If you are dx'd with dh it is definitive & no other testing is needed. You don't need to see a GI. Im in FL & have had a long day watching Tropical Storm Hermine & making preparations for it's track which is over where I live. I'm tired! I will have links for you to reputable medical info. on the rash but it make take me till tomorrow or even longer if we lose power.  I'll be back as soon as I can. Question: You're on Dapsone now? How long have you been on it? How is it working for you? Are you getting the proper testing at regular intervals to make sure it isn't doing bad things to you? Were you gluten free before the skin biopsy?
    • Thank you so much for your quick response, GFinDC. While I wouldn't be completely opposed to another skin biopsy, I already had 4 done (3 were done prior to my dermatologist suspecting DH) so I don't love the idea of  yet another hole and scar on my body. Plus, fortunately I don't have any fresh lesions now, which I believe is needed for the biopsy. I wish I would have known to see a GI before going gluten free but I was so desperate to get any relief that I started that and Dapsone as soon as my doctor mentioned it to me.  My rash is definitely symmetrical and I have it in all of the "classic" DH spots although it basically spread over my entire body. As much as I'd like a more formal diagnosis, I really don't think I can go through all of that again. It was so bad that not only was I getting no sleep but I had to change my sheets every morning because there was blood all over them. Sorry, TMI. The worst part is that this all developed during my ninth month of pregnancy and got much worse after I delivered my baby. So not only was I dealing with this insanely itchy rash but I had a newborn and a toddler to take care of.  My daughters' pediatrician did mention doing DNA testing on me first and then my daughters to see if there's any concern that they may be susceptible. I may just go that route for now. I was just curious if others have had similar test results to mine and how did their doctors treat it? Thanks again!
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