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Flyingmango

Questions For Veteran Celiac's

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I found out almost a year ago that I have Celiac. Like many with the disease, I spent most of my life being told by doctors that it was "in my head" and that there was nothing wrong with me. At 19, I had stomach surgery for gastroesophageal reflux disease, and have since learned that the celiac is probably what led to my reflux being severe enough to necessitate surgery.

I have been trying to be gluten free, but am shocked at how many people are out to profit from this disease. You can't even get a guide to safe restaurants to eat at without having to pay for the book. I don't see people with diabetes or cancer being charged for information, so why should celiacs?

In any case, now that I have been on the diet a year, I am still having problems with gluten in my diet, despite my attempts to completely irradicate all gluten from what I eat and am exposed to. I frequently shop at stores like Whole Foods and Trader Joe's, but often find that the food labeled as "gluten free" often contains gluten (i.e., barley disguised as "brown rice flour", etc.). Is it common for these foods not to be truly gluten-free, or could I be suffering from other allergies? I unfortunately have very extreme symptoms when I'm exposed to gluten (severe gastrointestinal stress, to the point of needing anti-nauseau medication, diarhea, easily bruising, lethargy, listlessness, depression and violent mood swings), so I really want to be a "good" celiac and not have any exposure, if I can help it. Thanks in advance for your input!

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Guest cassidy

I'm not a veteran, but I had surgery for gerd when I was 10. I was supposed to have another one last month, but thankfully found out about celiac before I went through with it. My gerd is now completely gone. It is distressing to know you had an unneccesary surgery because they couldn't figure out what was really wrong and told you for years it was all in your head.

In my experience, if I eat foods that are labeled gluten-free and are not produced in a facility that has wheat, I don't get sick. I have stopped eating out, because every time I did I would get sick from cc. I may get over this, but for right now, I'm not going to eat out.

I felt better in the beginning and then started having some symptoms again. I cut potatoes and chocolate out of my diet and my symptoms are gone. I'm going to wait a while and see if I can figure out what exactly in those items was bothering me. I have also figured out that I can't have pineapple, strawberries and kiwi.

I would definitely make sure everything you eat is gluten-free, and not made in the same place as wheat products. As you know, make sure there are no cross contamination issues at home or wherever you eat. If that doesn't work, then I would try cutting out other gluten-free foods and seeing what makes you feel better.

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Thanks so much for your response! It's very hard to find others who've had the surgery for GERD -much harder than other celiacs! My wrap seems to be doing fine, but I would like to talk with people that have the wrap who are pregnant/have been pregnant. We're wanting to start a family soon, but I'm still not convinced that I won't have difficulties with not being able to be sick/safety of anti-nausea drugs for a baby.

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Thanks so much for your response! It's very hard to find others who've had the surgery for GERD -much harder than other celiacs! My wrap seems to be doing fine, but I would like to talk with people that have the wrap who are pregnant/have been pregnant. We're wanting to start a family soon, but I'm still not convinced that I won't have difficulties with not being able to be sick/safety of anti-nausea drugs for a baby.

I wish I could help you out! I've had Celiac forever and I've been pregnant once. But I don't get violently ill when I eat gluten. And I never got the queasies when I was pregnant. I would probably wait, if I was you, until you're feeling better (i.e. finding out what's bothering your system - gluten or other allergy) before trying to get pregnant. You never know if you'll be one who gets nauseated or not those first few months...and the better you feel to begin with will make it easier to cope with pregnancy symptoms. I've heard other people talking about seeing a nutrionist (is that the right word?) for their dietary needs. Maybe you could look one up when you're ready to be pregnant - and they could help you find the right things that you can eat and that will also help nourish a growing baby. Good luck!


Diagnosed by biopsy with Celiac at age 1 in 1984.

No other health problems.

Hubby - no health problems.

Mallory (2 year old daughter) - no known health problems at this time.

Hannah (born 04/02/07) - no problems yet!

Family - no one diagnosed with Celiac - ever - to our knowledge. (Lucky me!)

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Flyingmango -- I don't know as much as many other here but I have been gluten dairy free for 5 almost 6 years. (I don't know anything about GERD surgery at all.) BUT I will tell you what I have learned the hard way about celiac disease. Many Celiac's also have a problem with dairy, for me it all dairy and also is eggs. It wasn't so hard because my reations were seizures assocated w/foods. It is not uncommon to have other food allergies or intolerences like I have. Like Corn...

I lived gluten & dairy free for 5 years and thought I was doing well. But I had no idea that SOY is bad for the body. I did away with milk and replaced it with SOY. For me a big fat NO NO. Not as we have been told by doctors and those in health field.

About a year ago I began getting sick again. I went thought major stress, the kind nornal people would end up in a nut-house over. It taxed my body to no end. The several deaths of loved ones around me around me, plus 2 hurricanes last year I was living on can food filled with soy. The stress was bad enough but my diet was filled with hidden soy products, and things in it's food groups call legumes. They are beans of all sorts even peas. And also the veggies group called "night shade" vegggies they began causing me to get sick all of a sudden. The result I developed a major thyroid problem. I've alway been a A-Type person and hyper as a kid. And so was my thyroid - hyer thyroid. I grew a hot noduel on my thyroid and had to under go radioactive iodine treatment and have never been right since. I have to take thyroid medication now for the rest of my life as a result. I believe there is a link between SOY and stress that caused my secondary food allergies.

KEEP IT SIMPLE. Know everything you put in your mouth and on your body. KEEP A FOOD (and body) JOURNAL. Go very basic to start over with. My rule is meat, fish, chicken, veggies, grilled broiled or baked, and fruit. I use olive oil instead of butter or mayo. Throw out everything in the house that is in a box and start fresh. I did. Watch out for cross contamination with food, and in your kitchen and those around you. Stay tuned into this site. Become active here with your experiences good and bad. They will guild you to better health. The people here are wonderful loving people that really care about you getting better.

As far as eating out... in the beginning it's hard OUTBACK STEAKHOUSE has a gluten free menu. Or try this too www.outbacksteakhouse.com/ourmenu/index.asp

So my thoughts is to pick up a couple of good books on celiac disease that helped me like "BREAKING THE VICIOUS CYCLE"

Another book that some people say are good is the Paloe Diet I have NOT read it yet I have ordered it.

Another book to STAY AWAY FROM is the "celiac bible" its not good from what many post here say.

Hope I was able to shead some light through my experience. Be well!

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Guest cassidy
Thanks so much for your response! It's very hard to find others who've had the surgery for GERD -much harder than other celiacs! My wrap seems to be doing fine, but I would like to talk with people that have the wrap who are pregnant/have been pregnant. We're wanting to start a family soon, but I'm still not convinced that I won't have difficulties with not being able to be sick/safety of anti-nausea drugs for a baby.

We are trying to get pregnant right now. How long ago did you have your wrap? My endoscopy showed that mine is entirely gone. But, my heartburn is also gone being gluten-free. Can you throw up at all? I could for the last 10 years with no problem. I would think, worse case, if you do throw up and your wrap comes undone. You may not need the wrap anymore because you aren't eating gluten and having heartburn.

I got some wristbands that have a little plastic ball that sits on your wrist to help with nausea. I get car sick, plane sick, boat sick, so I thought those would be helpful, I think they are called seasick bands. I haven't tried them yet. Also, I just read the best book about getting pregnant called "Taking Charge of Your Fertility." It teaches you a lot about your body that I don't think most people know (I didn't).

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I got some wristbands that have a little plastic ball that sits on your wrist to help with nausea. I get car sick, plane sick, boat sick, so I thought those would be helpful, I think they are called seasick bands. I haven't tried them yet.

I have never been pregnant -- but those seasick wrist band really helped me a lot when I was on my boat yachting. I was an avid boat my whole life and have never been seasick in my life. I swear by them and used them in 12" seas in a fierce storm when others were hanging over this side green in the face vomiting. You can buy them at West Marine or any boating store.

One other thing I found when I google pregnant celiac. I've pasted it and another link below.

This is a link to follow www.cfpc.ca/cfp/2004/Oct/vol50-oct-clinical-1.asp

Miscarriage and congenital malformation of the baby, such as neural tube defects, are risks for pregnant women with untreated celiac disease because of nutrient absorption problems.

Short stature refers to being significantly under-the-average height. Short stature results when childhood celiac disease prevents nutrient absorption during the years when nutrition is critical to a child's normal growth and development. Children who are diagnosed and treated before their growth stops may have a catch-up period.

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I never had the GERD surgery--but I've had major GERD since the age of 15. I had major hyperemesis with all 3 of my pregnancies, probably because of the GERD. I don't know how much of arole celiac played in that (I had never heard of it then), but I think it's interesting that I did not eat much bread or pasta while I was pregnat (most of the time, I ate eggs, corn chex, rice crackers, and strawberries just because that's what stayed down.

I, too was really worried about using anti-nausea meds while pregnat, and refused to take the Phenergan I was prescribed during my first pregnancy--but my hyperemesis was totally out of control. I lost weight, and developed preeclampsia, which is REALLY dangerous.

When I had to be IV'd during my second pregnancy, my doctor convinced me that it would be wiser to control the nausea, even though the meds carry some risk. We minimized the risk by taking the smallest possible dose that worked--I ended up taking about an eighth of the prescribed dose (half a 12.5 milligram tablet once a day instead of one 25-milligram pill twice a day). I still barfed twice a day for 9 months, but that was a lot better than the constant barfing I was doing before going on the Phenergan (also called Promethazine), and I was able to keep enough food down so that I could gain 12 pounds by the end of the pregnancy, and I did not develop preeclampsia again.

I hope this helps you!

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I think with celiac you always have to look for additional sensitivites, which seem to vary from person to person. A lot of celiacs have trouble with dairy and soy as well. For myself, I tested sensitive to gluten and casein. Soy was negative, yet I definitely have trouble with it for whatever reason so a test doesn't tell yo everything. I've also discovered that at least for now, I just can't digest starches (goodbye potatoes and rice), and I have a terrible problem with the gluten free bread products. I do fine with plain chicken, turkey, beef, most green veggies, most fruits. I'm hoping that down the road I can incorporate occasional other things (such as starchy veggies) back into my diet, but I think everything is inflamed or something right now, so I'm sticking to simple stuff. A food journal is a good idea.

Also....most allergists will tell you not to eat things every day....to rotate foods....this creates less of a chance for a sensitivity to develop. You can spend a lot of years eating a particular food and then out of the blue become sensitive to it. This happened to a friend of mine with strawberries....she ate them her whole life, and one day I guess her body revolted....she ended up in the emergency room. So now she can't have strawberries any more, yet she ate them for 50 years prior to this!


CAROLE

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

Enterolab 1/2006

IgA & tTg Positive

DQ2-0201 (celiac) and DQ1-0604 (gluten)

Casein IgA positive

Mom has 2 celiac genes

Both kids have a celiac gene.

Lots of celiac disease in my family, both sides.

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Guest nini
In any case, now that I have been on the diet a year, I am still having problems with gluten in my diet, despite my attempts to completely irradicate all gluten from what I eat and am exposed to. I frequently shop at stores like Whole Foods and Trader Joe's, but often find that the food labeled as "gluten free" often contains gluten (i.e., barley disguised as "brown rice flour", etc.). Is it common for these foods not to be truly gluten-free, or could I be suffering from other allergies? I unfortunately have very extreme symptoms when I'm exposed to gluten (severe gastrointestinal stress, to the point of needing anti-nauseau medication, diarhea, easily bruising, lethargy, listlessness, depression and violent mood swings), so I really want to be a "good" celiac and not have any exposure, if I can help it. Thanks in advance for your input!

how did you come to believe that barley was disguised as "brown rice flour" in products labeled as gluten free? brown rice flour is not barley. However, some products that are labeled gluten free are produced in facilities that also produce wheat products and there is risk of cross contamination. Some people are also allergic to rice or other foods.

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CMCM -- There is so much truth in the things you wrote. I totally agree with everything. The same thing happened to me and Strawberries too.

Have you tried "spagetti squash" and an alternative, it is a starchy veggies too. And yummy when cooked right.

I am like you with the rice and potatoes as well I can do a bit of spagetti squash now and then. Have you tried it?

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I frequently shop at stores like Whole Foods and Trader Joe's, but often find that the food labeled as "gluten free" often contains gluten (i.e., barley disguised as "brown rice flour", etc.). Is it common for these foods not to be truly gluten-free, or could I be suffering from other allergies?

You may just be allergic to rice. I'm allergic to both soy and rice so I end up avoiding most gltenn free products in general as I react to rice as badly as I do gluten.

Nini also has a point about cross contamination.

Also, there still could be gluten in your shampoos, toothpaste and other toiletries. You have to read the labels of the stuff going on your body as closely as the labels for the stuff going in. :)

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