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Dx w/celiac but can I also have gluten allergy?


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Old 11-22-2015, 10:14 PM   #1
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Red face Dx w/celiac but can I also have gluten allergy?

Hello, I was diagnosed with celiac disease (by endoscopy/biopsy) three weeks ago and have been on a strict GF diet ever since. The trouble I am having is with eating away from home and the subsequent reactions to eating food that just isn't as advertised. The first time happened a week after I started my GF diet. I was feeling better than I had in two years so the last thing I wanted to do was go off the diet but either the waitress or chef was misinformed or there was cross-contamination in the restaurant kitchen. Anyway, by the time I got home I had intense itching (this was a familiar and dreaded symptom) but my lips were very hot and sort-of tingling (this was a new symptom). There was shellfish in my dish so, even though I am not allergic to shellfish, I thought maybe that could have been the cause. I took a couple Benedryl and felt like I had gone three steps backward over the next few days: stomach issues, joint pain, migraines. I had not eaten out again until today. My husband went to Taco Bell and proudly came back with a surprise order of pintos and cheese in a separate container; the manager assured him that this was safe for even the most wheat-sensitive person. I didn't even check the website because I soooo wanted it to be true! (Big mistake, as there is gluten in TB's refried pinto beans and also their red sauce. The company website says that none of their menu items is safe for celiacs because of cross-contamination in the kitchen by way of shared equipment.) Within 45 minutes of eating, the itching started. I needed a nap and I was able to fall asleep. I woke up two hours later with my entire body on fire! My face was tomato red and very swollen. I took two Benedryl. An hour later, I took two more - although I wasn't getting worse, I wasn't any better. That was six hours ago and I just took two more because I felt the itching return. Why am I now reacting this way to gluten? Can I be developing an allergy to it? The diagnosis was a surprise because I didn't have the typical celiac presentation. I did have crazy itching and migraines but never the swelling with red, hot skin and dry itchy eyes. Should I ask my doctor for an epi-pen? Is this somewhat common for people who maintain a strict GF diet and accidentally ingest gluten? I appreciate any input from people who have been down this road and know it well. I won't see my GI again for another three months. Thank you!

 
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Old 11-22-2015, 11:59 PM   #2
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Re: Dx w/celiac but can I also have gluten allergy?

First of all, welcome to the boards!

So sorry you are going through this. It could be now that you are gluten free, that you will be even more intolerant of it than you were before. Also, it's only been 3 weeks and it takes months for gluten to leave your system, so your body could be hypersensitive as it tries to heal. Another factor is that it is common for people newly diagnosed as Celiac to lose other foods, because their bodies are so messed up and trying to heal. For example, within weeks of my diagnosis and going gluten free, I also developed an allergy/intolerance to soy. It took me awhile to figure out what was making me sick -- I kept a food journal and that's how I finally put it together. Soy, like gluten, is in nearly everything -- like mayonnaise, tuna, salad dressings, packaged foods, etc. FYI, McDonald's cooks everything in soybean oil. Not that I eat there -- but I'm just showing how soy is in so many things.

I don't eat out at any restaurants without checking them out first (and that's still not a guarantee they won't make me sick). If they don't have a gluten free menu I don't even bother because that means that they really don't get it to begin with. Even if they have a gluten free menu, I speak to a manager and ask about how they deal with cross-contamination. If they don't concern themselves with cross-contaimination, I don't eat there.

Eating out until you know a restaurant and the people there, requires lots of questions of the manager and the waitress. Most places are happy to help. I've been to several restaurants where if they didn't know if something had gluten or soy in it, they would bring me the food labels with the ingredient list on it.

A place like Taco Bell -- I just wouldn't trust an employee or manager there to "get it" or understand the importance of your question.

Anyway, your body is really going through a lot right now. Go easy on it.

 
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Old 11-23-2015, 09:32 AM   #3
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Re: Dx w/celiac but can I also have gluten allergy?

Great question, I have been wondering the same thing. Like you, a positive biopsy was done a few months ago and was told to go strict gluten free about 3 weeks ago. Even though I rarely ate gluten before (I had always thought I was just sensitive) I am noticing severe itching when I accidentally get it now. Lately I've even noticed severe itching and hives after I take my daily medicine. I'm not sure if, maybe, the meds have gluten in them but it can be quite miserable.

Have you noticed it with just gluten, or do you think that you are over-sensitive to anything? I have an appointment with both my GI and primary care doctor so I will be sure to bring this up. (I'll post if they shed some light on it).

 
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Old 11-23-2015, 10:21 AM   #4
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Re: Dx w/celiac but can I also have gluten allergy?

Thank you both for your encouragement and understanding. I have been keeping a food journal and there are days when I feel slightly symptomatic but I can't see a correlation to anything I have eaten (but I've been looking only for a gluten connection and not considering soy, etc. which could be my mistake). Allbregra, it's interesting that you ask about medications because I haven't spoken to my pharmacist yet about my meds and I need to. It's all a little overwhelming! But, I was so sick for so long that I really expected to hear the doctor tell me he found stage 4 cancer that all the imaging tests missed. I would get up in the morning and get my daughter to school and then go back to bed for the rest of the school day. I was exhausted and had crippling joint pain and acute abdominal pain. I've had lupus for two decades and have been through the grist mill with that but THIS was just totally debilitating. My favorite food was bread and, ironically, bread was the only thing I believed my stomach could tolerate and so I continued, unwittingly, to keep myself sick. So while a GF diet can be difficult, especially at first, it's given me my life back. I've never been a part of any forums before but I think participating in this one will be invaluable: many minds are better than one!

 
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Old 11-23-2015, 03:43 PM   #5
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Re: Dx w/celiac but can I also have gluten allergy?

FYI, medications can do often have gluten in them. Wheat is often used as a filler/binder. It depends on the manufacturer and the medication. And sometimes it's just the brand name that's gluten free and not the generic -- and vice versa. There is a handy website online that will help you determine which drugs are gluten free -- and which manufacturers you can use.

My pharmacy is now used to my restrictions, and understanding that sometimes they have to order the drug from a different manufacturer than they normally would.

 
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Old 12-13-2015, 05:52 AM   #6
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Re: Dx w/celiac but can I also have gluten allergy?

I saw my GI this week and, yes, you can be celiac and have an allergy. I guess it's just the way the body reacts to it all.

 
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