Sooo frustrated – Celiac, RA, Food Allergy, something….

By bpchera Latest Activity April 26, 2013 at 4:01 pm Views 1,193 Replies 3 Likes 1

bpchera

In April 2012 I ended up in hospital with vomiting and diarrhea. I had been sick for a week by the time I went to the doctor who sent me to hospital. He was concerned because of the RA meds I could have Legionnaires Disease, which was ridiculous because I had not had any water that wasn’t out of the fridge filter and I had not been in any bodies of water (fresh or salt) and I live in Florida. My Pulmonologist who I see for Asthma was the on-sight pulmonologist that day. They checked everything out, did chest x-ray, blood tests, gave me 5 rounds of 3 different antibiotics and then sent me home after 3 days. They just put it down to Gastroenteritis. Towards the end of the stay the diarrhea had mostly subsided and it was just vomiting a couple times a day. Gradually over time the vomiting spaced out over days. The best I did was going 3 weeks without vomiting about two months ago. The other thing that started was I was no longer able to eat as much food as I used to. Then over the past few weeks I have been starting to vomit or wretch every day again. I started trying to change my diet, taking out gluten, then I tried having just a salad making sure the dressing was gluten free (it was specifically marked on the menu) and had nothing else that could cause a problem (even talked to the chef). I thought I was eating the salad fine, couldn’t only eat half and then started to get an upset stomach. I threw up the whole thing. I usually on partially lose my lunch (excuse the pun), but this time it was totally and followed by dry heaves.
Several people in my family have been diagnosed with Celiac Disease. The most recent was my own brother. I had already cut out most gluten when he found out. I was given one blood test about 8 years ago when the first relative (who only shared one grandparent) got diagnosed and I was told it was negative. My sister’s doctor wouldn’t even test her because she was overweight. After my second relative got diagnosed recently I started out
I was also tested because I have had all kinds of GI symptoms since I was 16. They decided to remove my gallbladder even though all tests came back negative based on symptoms. The gallbladder was badly diseased with no stones. They determined that I also had GERD and a Hiatal Hernia. Because I was overweight for most of the time I have had the problems we assumed it couldn’t be malnutrition linked to Celiac because my cousin was wasting away when she was diagnosed. Doing research more recently I found out that it can cause you to gain weight. The things that were red flags that I came across lately that can be linked to Celiacs are, diseased gallbladder, unexplained iron anemia (got that a few years ago), IBS symptoms, auto-immune diseases (I was diagnosed with RA in 2011). So with cutting out the gluten I found that MOST of the IBS type symptoms that I have had for 20 years stopped.
Another thing I found in reading was a recent study studying Hep B vaccines not staying in Celiac sufferers system. I had a severe allergic reaction to a Hep B vaccine when I was 18. In reading more I found out that Hep B vaccine was made involving yeast (I don’t understand the specifics, I’m not a immunologist). Reading further I found out that some people’s bodies react to yeast mistaking it for gluten. So either way, I was thinking I should probably try cutting out yeast. In reading found out just how much stuff has yeast (ARGH!!!). If yeast is the problem it would explain why I reacted so bad to that salad.
I keep finding out stuff I thought was fine have gluten like granola bars, I didn’t realized oats have gluten. I got frustrated the other day with getting sick in the morning so decided to hell with it and had deep fried mushrooms with ranch sauce. I was sick yesterday and now today EVERYTHING I eat is causing my GI pain/problems. Since changing my diet I am also breaking out in hives and itchy rashes. Usually when this happens I look back and find out something had flavoring added to it. So much of the crap I read online is contradicting, too much of yeast information is about Candida not allergy. The whole thing about yeast is ridiculous. It’s like the only things that are safe from yeast are meats and even some people say what the animal is fed can be a problem.
Some of what I read says the Celiac, RA, etc can all be linked. I did find when I
I am at my wits end and it has only been about a few weeks of trying to cut out the yeast. I started cutting back on gluten in December. I’m losing weight like crazy now that I have cut so much out. I don’t know if it because I can’t no longer eat all those carbs, that I’m no longer eating stuff that is potentially causing me to be malnourished, or just because I don’t know what to eat and am not eating enough now.
If anyone knows of GOOD and reliable resources I would love to be pointed in their direction.
I am posting this on both the RA community and the Celiac community to give me a better chance of finding help.

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Replies (3 replies)

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  • SuSewSew
    SuSewSew April 28, 2013 at 1:13 am   

    Hey there! I went gluten-free Jan 5/2013. I don't have Celiac but so many things lead me in the direction of wheat being the issue. After three days the intense itching on my lower left ankle/calf stopped! For 5 years I'd seen dermatologists, had punch biopsies, spent $$$ on creams/lotions/potions that did nothing. As a little kids drs said I had excema (rash in elbows&knees creases plus the corners of my mouth. Well that is GONE! I won't die if I eat wheat but if I do I feel lousy, bloated, excema appears and I have trouble sleeping. So…

    It started when I saw this guy on DrOz last October/November. He's the one that wrote "Wheat Belly". Usually I don't pay much attention but it all made sense. I was at Costco and they had the paperback for $10 so I bought it. The first 1/3 of the book was quite tough to read as there is a lot of science but I slogged through. The middle was an eye opener from others and the latter was recipes/meal ideas. I discussed what I wanted to do with my husband and he was for it. I am the chief cook in the house so people eat what I prepare. I am also an international chef so food is an exciting part of our life.

    The library has an incredible amount of gluten-free recipe books. They all have info that's educational. Gluten-Free For Dummies is very good. Artisanal Gluten-Free Cooking by Kelli & Peter Bronski has an excellent Sandwich Bread recipe (ask me for tips when making this one). Elizabeth Hasselbeck has a wonderful recipe book (I can't remember the title) that is filled with "normal" recipes for the whole family. Find the Asian/Oriental market nearest you and take a walk though. It's incredible what you'll find. Who knew there were so many noodle that aren't wheat?! They also have the best prices on flours (rice, corn,etc) and starches (tapioca, potato,etc). It's a whole new, wonderful culinary world that is open to you. BTW, the libraries are on-line so you can browse for books and request them for pick-up at the library nearest you… and they are FREE!

    It's overwhelming at first but you'll feel so much better! My hubby is diabetic and he is doing great. As a side benefit we've been losing weight and have not changed anything but what we eat.OH! If you take vitamins check with the pharmacist or even the companies that make the stuff (they all have websites and 1-800 numbers) whether it's gluten-free. Soya sauce (try Bragg's). Take a walk through your local natural or health food store. You'll be eating healthier and better without gluten. I don't crave anything! We eat healthy and are both on a medical pension so there's a tight budget. For more info just send me a message.

    Hang in there. It's not fun being sick and it's even worse when the drs are not on your side. The likelyhood you have Celiac or Chrohn's seems pretty good to me as you have family with GI issues. I'm not a dr but several of the folks I know have those things. Good luck!

  • bpchera
    bpchera April 26, 2013 at 4:06 pm   

    Also, I can't to afford to see a GI doctor because I had to cancel my self-pay health insurance when they notified me they were going to give me a 25% hike in my monthly premium.

  • Jazminsw
    Jazminsw January 30, 2014 at 3:21 am   

    This may not help, but what IF it can? Get the book, "Eat to Live" by Dr. Joel Fuhrmann (Amazon is cheap and you can even order a used book) and he helps people with ALL sorts of issues. Like I said, it can't hurt to try it. I followed his plan last year and felt great, then went back off and found out this month that I have RA, so I'm going back on it next week when I buy groceries. Mostly fresh foods. Just an FYI. See what you think.