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Gluten Allergy: What It's Really Like

I see a lot of stories about Gluten allergies, but none tell the real story. What it's really like on a daily basis to have a gluten allergy. Most people think, Oh well, if you don't eat it you must feel fine.

Not so! We may feel better, but it's a constant battle. We have to be ever vigilant against the threat of cross contamination, of wheat being in our cosmetics, (cosmetics! How insane is that?) of slipping up and having "just a little", of bloating, diarrhea, constipation, or nausea, of skin rashes, puffiness, headaches, joint aches, memory loss.

It's a daily mission to find clothes that somehow hide our bloated bellies, without making it look worse, or without making us look pregnant when we certainly aren't!

The guy at the kabob place that looks at you weird when you tell him not to put the bread in there, that feels great! Not to mention your poor long suffering friends and family!

My grandma had celiac sprue, she was sicker that a cat with a 5 pound hairball! But, it never seemed as if it was a bad thing, she made delicious food, grew her own herbs, made her own dressing. It all seemed delicious and fresh and fabulous! Oh How I wish I had paid more attention then!

She made it all seem so effortless, now I know better. But, you never think you are going to have it too. So, how do you prepare? Now it's all about finding a happy balance, and taking care of yourself. So here are some tips! Yay!! Tips!

1. Always know where bathrooms are. Seriously, as soon as you walk in somewhere, be it someone's home, a restaurant, the grocery store, ask where the restroom is. You will be glad you did! I don't mean
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barge in someone's home and blurt our "Where's the John? I may need to drop a bomb on it!" But, being proactive is the name of the Gluten free game!

2. Do not cheat. DON'T! It's not worth it. That little slice of birthday cake, or delicious, delicious pizza hates you. It wants to make you sick. Hate it right back. If people look at you funny for glaring at food tell them you are a spy, and you think there's a microphone in there! People love spies.

3. Even though it's tempting to hoard your glorious gluten free snacks like a happy little miser, screaming "My Precious" over and over, be nice! It's no one's fault that the snacks cost so much, or are hard to find, and are one of the few things you enjoy. ...On second thought, hoard away little glutenators! That's your nom nom, and they should back off of it!

4. Don't be a Debbie Downer. No one wants to hear about how one time you ate at this restaurant before and got violently ill, and had to spend three days at home curled up by the toilet. Especially if the persons(s) you are talking to happens to enjoy dining at that restaurant. Don't say things like.."I wish I could have fried ice cream", while ravenously watching them as they enjoy their dessert. No one will be your friend anymore.

5. Don't be bitter. Even though finding the words 20ppm or less on the side of the box means that the product you have been stuffing down your gullet, while dancing around your living room  singing "I'm eating crackers!", may or may not have trace amounts of wheat in it, and you may or may not be curled up in a ball later, doesn't mean that you get to be bitter! You get to be proud that you didn't hop in the car, and race over to the FDA demanding restitution and throwing things dramatically. Good Job!

As always, Celiac.com welcomes your comments (see below).


Spread The Word







2 Responses:

 
Jeanine

said this on
18 Aug 2011 5:49:10 AM PDT
Awesome article!

 
June pilbin

said this on
18 Aug 2011 12:13:39 PM PDT
I love this! It's so true! People don't appreciate how serious it is as a condition




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I am very interested in this too. My daughter tested negative for celiac, but has terrible primarily neurological symptoms. Because she tested positive for SIBO at the time and was having some GI symptoms, I was told it was just a Fodmap issue. I knew better and we have been gluten free for 2 years. Fast forward to this February. She had a SIBO recurrence that I treated at home with diet and herbal antibiotics because I couldn't get the insurance referral. She was doing great. Then stupid me brought in gluten containing chick feed for the new baby chicks we got. Feed dust everywhere. Total mess. Really, no GI symptoms (she was SIBO free by then)...but the neurological symptoms! my daughter couldn't walk for three days. Burning down one leg, nerve pain in the foot. Also heaviness of limbs, headache and fatigue. Better after three days. But unfortunately she had a TINY gluten exposure at that three day mark and had another severe reaction: loss of balance, loss of feeling in her back and arms, couldn't see for a few seconds, and three days of hand numbness, fatigue, concentration problems. Well, I actually contacted Dr. Hadjivassilou by email and he confirmed that the symptoms are consistent with gluten ataxia but any testing would require a gluten challenge. Even with these exposures, antibodies would not be high enough. His suggestion was maintain vigilance gluten free. I just saw my daughter's GI at U of C and she really only recognizes celiac disease and neurological complications of that. But my impression is that gluten ataxia is another branch in the autoimmune side of things (with celiac and DH being the other two). At this point, I know a diagnosis is important. But I don't know how to get there. We homeschool right now so I can give her time to heal when she is accidentally glutened, I can keep my home safe for her (ugh, that I didn't think of the chicken feed!) But at some point, she is going to be in college, needing to take exams, and totally incapacitated because of an exposure. And doctors state side that are worth seeing? Who is looking at gluten ataxia in the US?

Caro..............monitoring only the TSH to gauge thyroid function is what endo's do who don' t do a good job of managing thyroid disease. They should do the full panel and check the actual thyroid hormone numbers.........T3 and T4. The importance of the TSH comes second to hormone levels. In order to track how severely the thyroid is under attack, you need to track antibody levels.......not the TSH. I did not stay with endocrinologists because I found they did not do a very good job and found much greater help and results with a functional medicine MD. You should not have a goiter if your thyroid is functioning well and your TSH is "normal". Maybe they should do a full panel? Going gluten free can have a profound affect for the better on thyroid function and that is something that is becoming more and more accepted today. Ask most people with Celiac and thyroid disease and they will tell you that. My thyroid never functioned well or was under control under after I discovered I had Celiac and went gluten free. It was the only way I got my antibody numbers back down close to normal and they were around 1200 when it was diagnosed with Celiac. I was diagnosed with Hashi's long before the Celiac diagnosis. I am not sure Vitamin D has anything to do with thyroid antibodies but who knows? Maybe it does have an affect for the better. It is really hard to get Vitmain D levels up, depending on where you live. Mine are going up, slowly, even after 12 years gluten-free but I live in the Northeast in the US and we don't have sun levels like they do in the South. I take 5,000 IU daily and that is a safe level to take, believe it or not. I get no sun on my job so the large dose it is! Having Celiac Disease should not stop you from being able to travel, especially S. America. I travel, although I do agree that some countries might be very difficult to be gluten free in. You can be a foodie and travel with Celiac so no worries on that front. You may not be able to sample from someone else's plate, unless they are eating gluten-free too but I have had awesome experiences with food when traveling so you can too!

I don't know what you drank or where.... so here are a few thoughts. - sure, a dive bar might have dirty glasses and serve a cocktail in a beer glass? But a nice reminder place, with a dishwasher, should be fine. If it's a sketchy place, Stick to wine, then it's served in wine glasses that aren't used for beer or bottled ciders in the bottle. - ciders on tap might, just a slight chance, have an issue. Because of beer on tap, mixed up lines, etc. - you may have a problem with alcohol - you may have issues with The high sugar content of the drink. I know I have similar issues if I drink serveral ciders of extra sugary brands - are you positive it was a gluten-free drink? Not this " redds Apple" pretending to be a cider - it's beer with apple flavor. Or one of those " gluten removed " beers?

Hi Stephanie, I'm also from the UK, I've found this site more helpful than anything we have! As already mentioned above, in my experience it could depend on what and where you were drinking. Gluten free food and drink isn't always (not usually) 100% gluten free as you may know, maybe you have become more sensitive to even a trace of gluten that is probably in gluten free food/drink. Is it possible you have a problem with corn, particularly high fructose corn syrup that is in a lot of alcoholic drinks? This was a big problem for me and the only alcoholic drinks I can tolerate are William Chase vodka and gin. I contacted the company last year and all their drinks are 100% gluten and corn free, made the old fashioned way with no additives, so maybe try their products if you like the occasional drink and see how you get on. If you drink out, not many pubs sell their products but I know Wetherspoons do and smaller wine bars may too. l was never a spirit drinker but I must say their products are absolutely lovely! Very easy on a compromised gut too considering it's alcohol. I second the suggestion on seeing a natural health practitioner. I've recently started seeing a medical herbalist, as I've got nowhere with my now many food intolerances since going gluten free last year and I've noticed a difference in my health already.

Sorry for the very late reply and thanks for the replies, I didn't get a notification of any. In case anyone else comes across this and has been wondering the same as I was, I did try a vegetable broth and I did react to it in the same way as if I'd eaten the vegetables. As for the candida, I've been using coconut oil and am seeing a medical herbalist for this and leaky gut. It's only been a few weeks but I've noticed an improvement all round.