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

#838857 Please Help! Concerned About Potential Of Celiac.

Posted by on 25 November 2012 - 12:44 PM

Regarding the iodine, many of us with DH need to eliminate it for a while because it seems to exacerbate the condition. Because iodine has been found to exacerbate a number of dermatological conditions, it's common for dermatologists to recommend avoiding it. As for your iron anemic, using iron shots is the old-fashioned way to deal with it. Nowadays, doctors prescribe intravenous iron infusions. Your doctors are probably unaware of this option, so you might have to educate them about it. You'll only need to get the infusions once a week for four weeks. After that, if your numbers fall again, you'll need to through the four-week infusion cycle again. If you have celiac and a gluten-free diet helps you recover from anemia, you can then discontinue the infusions.

Regardless of how your blood tests turn out, you should try to follow a gluten-free diet afterward. There's a great thread here on the Forum entitled either Celiac 101 or Gluten-free 101 (sorry--I can't recall). Someone will jump in shortly, I'm sure, to help you find the correct thread. Generally, though, when you begin a gluten-free diet, it's best to stick with natural foods (meats, dairy, vegetables, fruits, nuts, rice, etc.). This way, your chance of cross-contamination goes way down. Also, if you attempt to eat the gluten-free versions of your favorite foods right away, you may react to the special grains and/or gums that are used and may think that the gluten-free diet isn't helping you. After a few months of eating just natural foods, you can begin to explore gluten-free alternatives....and there are some very good ones out there. Just read some of the postings on this Forum--you'll get lots of great advice!

Also, you should begin addressing your other nutritional deficiencies as soon as possible. For your Vitamin D deficiency, you'll need to take Country Life Natural Vitamin D. The reason for this is that you also need to take Vitamin A at the same time (your cells have two A receptors for every D receptor), and it also contains medium-chain triglycerides to help you absorb both Vitamins D and A. I actually was taking 50,000 iu's of Vitamin D daily for a year--and I couldn't overcome my Vitamin D deficiency. However, when I attended a celiac conference last June in Seattle, one of the presenters discussed how taking Country Life Natural Vitamin D can help celiacs overcome their Vitamin D deficiency--and after only a few months, my Vitamin D level was extremely healthy (and I only take 400 iu's a day!).

You're heading in the right direction....now go and get healthy!
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#838827 Please Help! Concerned About Potential Of Celiac.

Posted by on 25 November 2012 - 10:51 AM

I think you've found the answer you've been seeking! Your medical records read just like ours. Now, if you get tested, ask for a FULL CELIAC PANEL. They may not even know what that is, so they will have to find out. If, however, the blood tests come out negative, fear not. Simply go on a very strict gluten-free diet to find out whether or not you're able to resolve your physical issues that way. You see, celiac can cause your symptoms, but so can gluten sensitivity (which cannot be tested for). I strongly suspect that once you remove gluten from your diet, you'll begin to see improvements in your health. It may take a while for certain issues to resolve, such as the breaking teeth and nutritional deficiencies because it takes a while for the lining of the small intestine to heal. However, your digestive complaints may start resolving sooner. For many of us, while some symptoms diminished quite a bit, it took 18-24 months to fully feel well again.

I'm sorry that your health had to suffer so severely before you discovered what is wrong. Shame on your doctors for not suspecting something as common as celiac disease. Unfortunately, when they were in medical school, they were taught that celiac is very rare and is usually outgrown. This information is patently false, and the AMA has been trying to correct that misinformation during the past five years. Your doctors probably didn't get that memo. They need to be educated so that they understand that they should ALWAYS test for celiac when nutritional deficiencies or digestive complaints don't resolve. However, again, if you test negative for celiac, please consider following a gluten-free diet.

Lastly, and this is important: You are not allowed to serve in the military with celiac disease. If you wish to continue serving our country, you may wish to simply follow a gluten-free diet and let things lie. Your skin condition might be Dermatitis Herpetiformis (DH), which will resolve once you stop eating gluten (and iodine for a while, too). I know a man who remained in the military for years even though he suffered terribly from DH. He told me that his doctor understood that he had to have celiac in order to have DH, but he didn't include that in his diagnosis so that my friend could remain in the Air Force. My friend was treated with Dapsone for the DH and put up with the other symptoms until he retired from the Air Force. If you end up in a situation where only military food is available, you can always say that you have a gluten allergy or that you're gluten sensitive--just don't say that you think you have celiac.

Take care....and I feel very strongly that you're about to regain your health.
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#838689 Oddball?

Posted by on 24 November 2012 - 12:47 PM

i can say it once, but others will undoubtedly echo it several times: the ONLY option is to go completely gluten free. I know that it's difficult at first to adapt to a new diet, but it is absolutely essential that you understand that you are doing grave damage to your body when you eat even the smallest amount of gluten. You're still young, so you may have damaged your intestinal lining very little; however, if you continue to eat gluten, you could end up with some horrendous disabilities. For one thing, you could develop other auto-immune diseases such as Hashimoto's Thyroiditis, lupus, gluten ataxia, Sjogren's, etc, or develop neurological difficulties such as migraines, epilepsy, depression, etc. Having celiac means you do NOT have the option to eat or not eat gluten--you must avoid it completely. That said, you will probably not be much older when treatments become available that will allow you to eat gluten for short periods of time. There is also a vaccine that is expected to come on the market within the next five years. In the interim, please take good care of your health and adopt a strict, gluten-free diet. Sometimes when you damage a part of your small intestine, it does NOT repair itself....so you are left with a lifelong disability.
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#838432 Not Sure I Can Do Much More Of This...:(

Posted by on 22 November 2012 - 02:19 PM

Oh, honey, we've ALL been there! I remember my first Thanksgiving after finding out I had celiac. My mom had made sure that the turkey was gluten free, and she'd prepared gluten-free dishes to go along with it. However, after the meal, I became extremely ill....and discovered that she had stuffed the turkey with regular stuffing. She forgot that the gravy would be made from a turkey stuffed with gluten--it just hadn't occurred to her. She felt really bad....but I felt worse. However, as it turned out, my mom was then diagnosed with celiac several months later, and our Thanksgivings are now always gluten-free affairs. Actually, ALL of our family gatherings--regardless of who hosts them--are gluten-free events. You see, my son also has celiac, and my sister's daughter ended up having it, too.

That said, I think your mom's personality sounds a little ADHD to me. That means she could very well have celiac, too. Has she ever considered this possibility? You got it either from your dad or your mom.....so??? If your mother ends up being diagnosed with celiac, I think your stepdad will eventually change his tune. He needs to be educated on this disease. Sometimes all it takes is a bit of education, and then they themselves wonder if they have it--LOL!

I know this diet seems hard now, and I do admit that it took me about two years before I stopped feeling bitter about not being able to eat my favorite things. However, this was in the "Dark Ages" when gluten-free pizzas and sourdough bread didn't exist. Nowadays there are so many more options! Have you tried the gluten-free chocolate chip cookies at Trader Joe's? They're wonderful and contain "real" ingredients. Against the Grain Gourmet baguettes are great, too, and can be found at Whole Foods and other stores. Because you have insulin resistance, you should definitely look into Mark's Daily Apple, as suggested above. The paleo/primal diet would be perfect for you. However, if you feel it's too restrictive, heck, there really are many options for eating like a normal person. I don't feel as though I'm missing out on anything....except for a few occasional rotten experiences at restaurants (who were run by people like your stepdad). Otherwise, I'm perfectly happy with my life and my diet. Believe me--you'll feel this way, too, one day. I agree that today was a disaster, but there will be fewer and fewer such disastrous days--just stand your ground and ensure your OWN happiness.
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#838055 Will My Children Be Celiac?

Posted by on 20 November 2012 - 09:55 PM

I think the studies are totally off on this. BOTH of my kids ended up having celiac. My mom has it, three of her siblings have it, I'm fairly positive that my brother's two kids have it, my sister's daughter has it--get my drift? Even though the official nonsense says that it's 1 out of 22 who get it, it seems a lot more common than that. If you have celiac, just make certain your household is gluten free. Your kids can eat gluten outside of the home....and if it ends up being a problem for them, then you'll have your answer.
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#835869 Newly Diagnosed And Completely Lost!

Posted by on 11 November 2012 - 12:27 PM

Complicated? Only in the beginning! Gluten-free bakeries are extremely popular these days--you could end up with a very successful enterprise!
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#835864 Can Somebody Help Me Figure Out Where To Go From Here?

Posted by on 11 November 2012 - 12:18 PM

With celiac, oftentimes the first area to be damaged is the area where iron is absorbed, and, therefore, iron anemia can be the first or foremost symptom. Your child is still young, so it's not unusual for the doctors to find very little damage. Since iron makes him constipated and gives him stomach distress, I agree that infusions for a little while might help you discover whether or not the gluten-free diet is helpful to him. Until then, you won't know if it's the iron supplement or celiac that is the culprit. You mention a risk with the infusions--I wonder what that might be (?). I took iron infusions for years and never felt that I was at risk. Some people's intestinal linings never properly heal, and they need these infusions in order to keep their iron at normal levels. Hopefully, your son's will heal and he'll eventually no longer need any iron support at all.
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#834773 Ack! Is This A Wheat Allergy Too?

Posted by on 06 November 2012 - 10:42 AM

Three months on a gluten-free diet might not be long enough to clear up the D. I had D issues for 18 months--and I was very strict about following the diet and didn't have issues with other foods. However, what helped me was taking L-glutamine. That's what finally cleared it up.
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#834636 Rash Relief Help?

Posted by on 05 November 2012 - 09:00 PM

Important: Eliminate all iodine for a while. It's important, when you have DH, to eliminate BOTH gluten and iodine. If you can do this, your rash should stop itching within a few days. This means that you should eliminate dairy during that time, because dairy contains high amounts of iodine in some areas of the country.
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#834393 Afraid Yet Optimistic, For My Husband

Posted by on 04 November 2012 - 04:57 PM

Yes, your husband is a poster child for celiac....and I'm not surprised it took the doctors so long to figure it out. That, as you know, is common. Doctors in the U.S. simply were not trained to look for celiac disease and didn't recognize it even when symptoms were present. Your husband's overeating may have been caused by malnutrition--no matter how much he ate, his body was starving for nutrients that it couldn't absorb. Recent studies have shown that more adult celiacs are OVERweight than underweight. His joint pain might very well resolve on a gluten-free diet--it has for many of us here on the Forum. My mother suffered from horrible sinus problems her entire life until she was diagnosed with celiac and went on a gluten-free diet. Since it sounds as though the biopsy was positive, the bloodwork really isn't all that necessary. You and he should accept that he has celiac and immediately go gluten free. It is very uncommon to have a false positive with regard to a biopsy.

Your husband is about to start feeling wonderful! If the bloodwork should result in a false negative, please disregard it and have him follow a gluten-free diet. It may take a while to heal completely (12-24 months), but he should see some improvements right away.
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#833830 3 Day Delay?

Posted by on 01 November 2012 - 11:11 AM

Is there any chance that you may have had a stomach flu? It's going around right now.....so just a thought.
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#833829 How Do You Deal With The Anger Of Accidental Glutening?

Posted by on 01 November 2012 - 11:08 AM

When I read posts like yours from someone who has just adopted a gluten-free diet, I'm reminded of how oftentimes it is assumed that hidden gluten was the culprit when, in fact, your gut is still in the healing stage and may be reacting to other foods because it is mis-identifying those foods as containing gluten. I have seen countless posts where newbies have complained of how a gluten-free frozen meal or a gluten-free bread made them feel glutened and how they had fired off letters of complaint....but, really, when you first start out, your body can be very confused and may react negatively to many foods. If you're sure that gluten was the culprit, then have your angry moment and move on; however, if you constantly feel as though you've encounted "hidden" gluten where there should not have been, you may consider looking into whether or not you are currently sensitive to other foods. Once your immune system settles down, you can reintroduce any "trouble" foods...and it's quite possible that you'll be able to tolerate them. Foods to consider are dairy, soy, nightshade vegetables, other grains (even rice), and the gums in gluten-free products.

I hope you can get to the bottom of your hidden-gluten mystery and that you feel better soon....
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#833688 Chipotle!

Posted by on 31 October 2012 - 09:01 PM

A number of people on this Forum have written to say similar nice things about Chipotle....and, in the future, please DO ask them to change gloves. It reinforces their training, and it's necessary to protect you.
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#833578 Confused About Test Results Of 5 Year Old. Doctor Very Unhelpful!

Posted by on 30 October 2012 - 08:06 PM

Regarding the reading of labels, that may not be necessary for a while. Generally, we advise people with newly diagnosed celiac to eat only whole, natural foods. I realize, however, that your little girl will probably want some sweets, crackers, and bread. Just be sure that everything is labeled as certified gluten free--then you won't need to read the labels. Otherwise, home-cooked meals of natural foods will ensure that she doesn't experience cross-contamination. I think you're about to see a very different little girl shortly! Best to you both!
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#833530 Confused About Test Results Of 5 Year Old. Doctor Very Unhelpful!

Posted by on 30 October 2012 - 05:26 PM

Good grief! That gastro is a complete idiot!!! With two positive full celiac panels, I don't even see why an endoscopy would be necessary. Also, the damage CANNOT be viewed without a microscope! He sounds so inept, be prepared to hear that the biopsy was negative because he probably didn't take biopsies from the right area or even enough biopsies. Like I said: What a complete idiot!

With the positive bloodwork, you can be sure that your daughter DOES, in fact, have celiac disease. Her numerous symptoms alone point to an obvious diagnosis of celiac. By the way, out-of-control, aggressive, anxious, and/or depressed behavior in children with celiac are widely reported and accepted as standard symptoms of the disease. Many children (and adults) with celiac also exhibit symptoms of ADHD. Your gastro is probably unaware of the latest research on celiac, which sets forth that celiac is not only a disease of the gut; in fact, it is also a neurological disease. Your little girl is very lucky to have a mother who persevered to get a diagnosis. Now, you'll need to move on with changing your daughter's diet and paying no attention to the gastro behind the curtain. That man shouldn't even be practicing as a doctor, in my opinion.

I'm sure others will jump in with similar comments. In the meantime, please remove gluten from your daughter's diet (and possibly dairy for a while, too, while she's healing).
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