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Member Since 16 Nov 2008
Offline Last Active Apr 18 2013 07:40 PM

#714607 Carry Gene But Not Celiac?

Posted by on 06 July 2011 - 09:58 AM

Yes, you can most definitely have the gene (or genes) and not test positive for a number of reasons. For one thing, celiac may not have been triggered. You generally must have one of the genes and then a triggering event (illness, surgery, birth, traumatic event, etc.) to develop celiac, although I think that one day a more definitive reason for why some people develop celiac and others don't will be discovered. Anyway, even though you don't really need to avoid gluten, unless you have a sensitivity, you should get tested regularly to make sure that you don't develop celiac in the future.

Also, it's possible that your test results presented a false-negative and that you actually DO have celiac....or you don't have enough damage yet to test positive. Bottom line: if gluten makes you feel ill, avoid it.
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#714337 Is There A Book To Teach Family About Cc?

Posted by on 05 July 2011 - 11:18 AM

I'd love to help with a book, too! What a great idea! I've worked as an editor and have taught grammar, punctuation, spelling, and writing.....so feel free to call on me if you need any help.

It would be great if you could have separate chapters on cross-contamination at friends' homes, potlucks, restaurants, and one's own home. Also, it would be tremendously helpful to have a chapter with personal stories from DH sufferers' relating their experiences with simply touching gluten. Doctors need to see something in writing in order to understand how very sensitive people with celiac and DH can be.

I hope you run with this story!
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#714334 Making Gluten Bread For Others Is Probably Bad, Right?

Posted by on 05 July 2011 - 11:06 AM

Yes, when I handle food that has gluten, my palms itch terribly afterward. However, they generally don't actually break out. When I had DH (for many years), it was primarily on my face, neck, sole of one foot, and on one palm. My dermatologists all tried to convince me that I just had a very severe case of acne and treated it as such. As a result, it took years to get rid of the scarring that resulted from their poor advice.

If you notice that your DH (or "acne") gets worse with dairy, there's a possibility that the dairy in your area is high in iodine. I actually made the connection to dairy before I did to gluten. If you switch to organic dairy, that might help. I had to completely get off dairy and all iodine to make the DH lesions go away for good, but I've reintroduced organic dairy without any problem. So, it might help to eliminate iodized salt, foods that commonly have iodized salt on them (chips, french fries, etc.), dairy, seafood, and asparagus as well as gluten. Also, you should try to find gluten-free shampoos, toothpastes, makeup, etc. Lipstick definitely has gluten in it, so I just use Avon's Care Deeply lip balm (though you can find expensive gluten-free lipsticks online).

And, yes, all the literature and doctors will say that you can't get DH from touching gluten, but they are all WRONG! There have been no medical studies on this, and doctors simply parrot what they were taught or what they've read. However, if you follow this forum on a regular basis, you'll see that we commonly do react to touching gluten. I used to be able to touch gluten without any problems, but I've become so sensitive from being gluten-free, that's no longer the case.

Since you would not be able to take Dapsone, sticking with a gluten-free and iodine-free diet should do the trick. About seeing a dermatologist? Well, in my opinion, that would be a waste of money and time....but, then, I've never met a competent one (and I've seen at least a dozen).
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#713362 My Mum Might Be Celiac But Wont Get Tested

Posted by on 30 June 2011 - 10:15 PM

When I was diagnosed, I knew immediately that my mother and son also had the same condition because they'd both exhibited the same symptoms for years. My son tested positive and has been gluten free ever since. My mother told me that she didn't know what I was talking about and claimed that she hadn't had any of the symptoms that she'd complained about for years. I tried to convince her several times, but she adamantly refused to believe that she had celiac. Fast-forward to a year later. She called me and declared tearfully that a test had revealed that her bones were 70% decalcified, and she asked me what could have caused this to happen. When I explained that celiac was probably at fault, she finally broke down crying. She said that she hadn't wanted to accept that she has celiac because the thought of giving up sourdough bread and wheat pasta made her too upset. After that discussion, she went gluten free, learned to cook fantastic gluten-free meals, bake tasty desserts, and regained her health. She had been plagued for years with constant sinus infections, terrible arthritis, chronic diarrhea, anemia, tooth breakage, dark circles under eyes, and fatigue. Today she is in excellent health at age 75 and looks ten years younger than the day she accepted that she had celiac. She's so happy with her good health, she never seems to miss her old way of eating at all.

So...don't give up. Your mom might eventually come around.
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#712099 Please Help - So Many Questions

Posted by on 26 June 2011 - 04:10 PM

My gosh, you sound like a walking advertisement for celiac and Dermatitis Herpetiformis (DH)! Have you read some of the postings in the DH forum yet? There may be some threads on how people treat the itching until the rash eventually goes away after going gluten free. You should know, too, that iodine can also exacerbate DH, so you should eliminate iodized salt, seafood, and asparagus in addition to gluten. If your blood labs come out positive for celiac, you can skip the endoscopy in favor of having your itchy lesions biopsied instead....because if you have DH, you have celiac. If you have a skin biopsy done, you'll need to request that the dermatologist take a sample of skin JUST ADJACENT to the lesion and not from the lesion itself; otherwise, the test will come back negative.

From the sound of things, even if your blood tests come back negative (which happens with regularity), you might want to eat a gluten-free diet for a while to see if you start feeling better. If your rash clears up, you'll have your answer as to whether or not it is, in fact, DH and therefore celiac. As for the diet, I know that it seems difficult and complex at first, but that's only because people have become so accustomed to eating processed foods. Most people rely heavily on processed foods for the mainstay of their diet, but gluten-free eating is actually quite simple. If you eat natural foods rather than processed foods, you'll know that you're eating a gluten-free diet and don't have to worry so much--if at all--about cross-contamination. Many newly diagnosed celiacs follow a natural diet until their symptoms abate and then begin adding in gluten-free processed foods like bread, crackers, and treats. One of the best reasons for eating a natural diet at first is that your body will receive good nutrition, which is very important if the lining of your small intestine has been damaged. Also, many people react badly to either the alternate grains in gluten-free processed foods or the xanthan gum that is used to give the products a better texture. So, if you eat processed gluten-free foods, you may continue to have digestive problems and even think that perhaps you don't have a problem with gluten since you're still sick from "gluten-free" foods. Also, many celiacs cannot tolerate soy and/or oats (even the gluten-free kind), so you might eliminate them now and add them back in later to see if you have a bad reaction to either food.

I'm sure others will chime in soon with advice, but I'm glad that you've found us here at the forum. There's much to learn about celiac and DH, and this is one of the best places on the Web to receive honest, knowledgeable advice. Welcome!
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#709953 Can Celiac Disease Be Intermittent?

Posted by on 18 June 2011 - 11:55 AM

One of the hallmarks of celiac is that symptoms can wax and wane throughout one's ilfetime. There were periods in my life when I felt almost completely well. You might be reacting to more than just gluten, and many people go on an elimination diet that eliminates gluten, dairy, soy, and sometimes corn. I'm sure others will chime in with additional advice.

Now, as for your feeling cold and shaky after climbing stairs, that sounds a lot like hypoglycemia to me. Try eating a banana a few minutes before you climb stairs or do other exercises. Especially after starting a gluten-free diet, you have to remember that if you cut out grains, you're cutting out a large number of carbs that your body is used to consuming. That can cause temporary hypoglycemia when combined with exercise. Fruits are good at pumping in needed glucose at these times (banana, orange juice, an apple, etc.). Just my two cents....
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#707795 Your Top Two Pieces Of Advice

Posted by on 11 June 2011 - 11:26 AM

Re IrishHeart's last posting:

"5. If you tell your family that it is genetic and you try to educate them, be prepared to be scoffed at--or worse, ignored. Just know, you tried your best to spare them the misery. Then, let it go."

Gee, and here I've been beating them with a stick like a pinata until the gluten all falls out!!
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#705557 Your Top Two Pieces Of Advice

Posted by on 03 June 2011 - 10:11 PM

1. Never, ever, ever eat at a potluck!!

2. I repeat: Never eat at a potluck!!!!!
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#703862 I Can't Stop Blathering On

Posted by on 30 May 2011 - 09:24 AM

What I have found is that when I'm asked why I'm not eating and I mention celiac and my inability to eat gluten, people around me become extremely interested. The questions go on and on, and more people tend to gather around to listen. I've come to believe that so many people have digestive and nutritional issues, they are searching for the cause...and, inevitably, they wonder if gluten might be the answer. Without exception, someone will say something like, "That sounds like my mom," or "That sounds like my roommate."

Generally, if I'm at a gathering where some people already know my condition, I just give a short explanation and drop it. However, if it's the first time a group has met me, I provide further information if prodded to do so (like at workshops where I've been served a "special" meal). Although I personally feel a bit like a bore, I also come away feeling as though someone might have been helped. I think that spreading "the word" is important because those people who've been educated will now talk to others about the condition....and somewhere down the line, perhaps someone will get the help they need.

Don't worry--you may be helping people...and not even know it.
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#700672 Opinions On L Glutamine?

Posted by on 18 May 2011 - 10:02 PM

I can highly recommend L-Glutamine. I've taken it myself with great results, and it's often mentioned at celiac conferences as being helpful with healing the gut.
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#699565 New Dx 2 Teens

Posted by on 14 May 2011 - 02:31 PM

Okay, I'm going to go out on a limb here and disagree with my fellow posters. It doesn't mean that they're wrong--I just disagree. If you read a lot of posts on this forum, you'll see that there are two schools of thought on having the endoscopy. One of the top experts in the world, Dr. Alessio Fasano, has spoken at numerous conferences on this topic, and even he feels that an endoscopy is not always necessary. He has stated that the endoscopy frequently results in a false negative because of the inexperience of the doctor or pathologist, the fact that biopsies have been taken from areas that aren't damaged, or because the scope is not long enough to reach the damaged areas. He has said that as long as there are symptoms, a positive blood test, a positive genetic test (which you could have done rather than an invasive endoscopy), and the symptoms return once gluten is reintroduced, an endoscopy is not necessary and the person should be assumed to have celiac. Personally, I would suggest placing both children on a gluten-free diet. After a few months, reintroduce gluten--if they truly do have celiac, they may have a very bad response to its reintroduction. You'll then have your answer.

I think it's interesting that you describe your daughter's personality in such vivid terms--at the many conferences I've attended that included speakers who discussed children's behavior who cannot tolerate gluten, the marked personality traits of a child with celiac are just as you described. Young children are oftentimes described as anxious and clingy. Older children are oftentimes described as anxious, paranoid, ADHD, depressed, etc. My son became extremely anxious, depressed, and paranoid after his celiac was triggered at age 11. All of that resolved on a gluten-free diet when we discovered he had celiac at age 15. His growth had slowed after age 11--he fell from the 110% percentile to the 80% percentile. He was supposed to end up somewhere between 6'5" and 6'8"; but even though his growth increased on the gluten-free diet, he ended up closer to 6'4".

As for school lunches and food at colleges, that can vary. Personally, I would NEVER trust a school to serve decent, gluten-free food to my young child because I'd fear cross-contamination. Also, many children don't wish to appear "different." Had I known about my children's celiac when they were younger, I would have packed gluten-free food for them--even then, I didn't make them eat cafeteria food. When my daughter attended Stanford University, she was the restaurant manager at one of the dorms--luckily, the sole child with celiac that enrolled as a freshman that year was placed in my daughter's dorm. No "note" from a doctor had been required, and my daughter was able to accommodate the student's diet with very little trouble. My daughter, unfortunately, refuses to follow a gluten-free diet--she doesn't yet feel sick enough, she says, to change her whole life. My son, however, is 24 and must follow the diet closely, or he becomes extremely ill and breaks out in DH on his face, feet, and hands.

Quite frankly, I've been so disenchanted with doctors because of the long road to my diagnosis, I don't trust them to interpret the tests properly or to understand that an endoscopy doesn't necessarily work for a diagnosis. Do what you feel would be in the best interest of your children.
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#697603 Brainless Neurologist

Posted by on 07 May 2011 - 02:59 PM

I agree....and I'll bet she didn't wash her hands before she started handing out her business cards. Cc, here we come! I wonder how many people felt ill afterwards and couldn't figure out why....

I live in Martinez and am a member of the Marin GIG, but I haven't been able to make any of the meetings yet. I really wanted to go to Wagner's talk, but I was recovering from cancer surgery. I was so bummed! Maybe I'll be able to make the next one. I'm glad that the talk was worth going to, though I have to admit that I would have been mad, too, if I'd seen someone in my midst chowing down a flour burrito. I wonder if the Marin group's invitations should request that attendees refrain from bringing gluten to the meetings (I would think that's a real "duh" concept to most people, but perhaps it needs to be actually stated somewhere).
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#696465 Foot Pain, Anyone?

Posted by on 02 May 2011 - 06:04 PM

Yes, to maintain tendon and ligament health, you have to be able to absorb certain minerals; hence, pain in the feet and/or joints.
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#694461 I Am Sick, Been In The Hospital A Bunch, Not Sure What To Do Anymore

Posted by on 23 April 2011 - 06:29 PM

Two things to add to this discussion:

1. You might consider taking L-Glutamine to heal your gut. Many of us use this supplement when we need to heal.

2. Since you're having trouble getting insurance, if you get a celiac diagnosis, you might NEVER get insurance again. Perhaps it would be best in your case to forgo an official diagnosis.

Okay, there's a third thing--you mentioned that your young son seems to be having a similar health pattern. Have you considered having him go gluten free with you? Since this is a genetic disease and young brains can be affected by gluten (reduced blow flow to the frontal lobes and plaques can form throughout the brain), it would be great if your son's gluten problems could be resolved as early as possible. Many people don't know that celiac/gluten can cause many neurological problems to develop (ADHD, depression, anxiety, migraines, epilepsy, bipolar, and even schizophrenia).

Your case sounds extreme--I hope you begin experiencing fewer health problems soon! If I get glutened, one of the symptoms I hate the most is how my joints and wrists ache. It feels like tendonitis throughout my whole body. You sound like such a "classic" case of celiac....please do try to follow the diet. You deserve to live a healthful life.
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#694367 I Might Be An Idiot, But I Am Desperate...

Posted by on 23 April 2011 - 10:53 AM

You might try taking L-Glutamine, which heals the gut. It ended years of D for me.
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