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

#818427 Failed University

Posted by on 18 August 2012 - 09:57 AM

Your post made me very sad. I feel that your university failed YOU and not the other way around. They poisoned you! Your tuition and room/board $$ should all be returned to you, and they should send a letter of apology. Of course, this is the real world....and you'll never see these things, but please know that that would be the RIGHT and FAIR thing for them to do. Are there no laws in your country that would serve to protect you in such circumstances? Was the university not obligated to feed you properly? From your statements, I gather that you may live in Australia, New Zealand, or England, but I could be wrong. Aren't people with disabilities given some type of accommodation in your country?

In the interim, perhaps you could investigate an online university to get you back on track. And, during your job search, please be careful to avoid any place where wheat is present. Once your brain fog is gone and your strength returns, I hope a plan of action will be apparent to you...but you'll need to plan carefully. I do wish you all the best--you sound like a very nice, genuinely caring person, and you don't deserve to have these types of setbacks.

Regarding your urine, I would like to encourage you to see a specialist about it. You may be experiencing a health issue unrelated to gluten that is affecting your health. What you describe is NOT normal, and a urologist may be able to help you. Please do not delay in contacting a doctor NOW--these types of matters can be very serious....but easily resolved. Here's a link to the Mayo Clinic where foamy urine is discussed--it indicates that there may be too much protein in your urine:


Good luck to you!
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#818426 2 Toddlers, 2 Upset Bellies, 1 Exhausted Mom

Posted by on 18 August 2012 - 09:41 AM

Okay, I think it's very possible that your children are, in fact, suffering from either celiac or food sensitivities. However, with the symptoms you've described, I just need to mention the following possibilities: water issues (could there be something in the water?), carpet shampoo issues (do you shampoo your carpets frequently...and do the children crawl around on your carpets), and is there the possibility of a mold issue hidden somewhere in the house? I bring these possibilities up because you seem to be doing everything to accommodate what may be food sensitivities, but your children may, in fact, be suffering from some type of hidden poisons unrelated to foods. You may have to think out of the box for a moment...or possibility you've already considered all of these things and have concluded that the problem is indeed food. However, I thought I might just mention these possibilities.
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#818293 2 Year Old With Dermatitis Herpetiformis

Posted by on 17 August 2012 - 10:19 AM

If you do wish to have an official diagnosis, I agree with Karen that your toddler will need to be fed gluten for a while so that a dermatologist can do a biopsy. However, if you choose this route, you should do a little research to make sure that the dermatologist you take him to has past experience with DH biopsies. Most do NOT have experience and will biopsy a lesion directly. This results in a false negative. The doctor MUST biopsy CLEAR skin adjacent to a lesion and NOT the lesion itself.

Second, as for why your son's DH has returned, there could be several possibilities. Celiacs with DH tend to be highly sensitive to gluten exposure, and it could be that the shampoo you're using contains wheat (many do). There are several shampoo brands that don't contain gluten--I personally use Dessert Essence Organics shampoos and EO shampoos. Both can be found at stores like Whole Foods. Your son can also get gluten contamination from a relative or friend kissing him on the lips or from touching a contaminated toy. Play Dough and certain glues contain gluten, and he should avoid touching them.

Lastly, celiacs with DH are oftentimes affected by exposure to iodine. For many of us, the gluten causes the eruption to occur, but it is iodine that keeps the DH rash active. You should switch to non-iodized salt and avoid feeding him seafood, asparagus, salty snacks (chips, pretzels, popcorn, crackers, etc.), and perhaps eliminate dairy for a while. In some areas, the dairy is contaminated with high levels of iodine. I switched to organic dairy in my area, because the regular brands all contained iodine. You may have to experiment with different brands.

I hope these suggestions help!
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#815471 Another Newbie: Could This Be Dh?

Posted by on 01 August 2012 - 09:25 PM

I agree completely with eatmeatforgood! The photos really look like DH, and your description is consistent with this type of rash....also, since it has responded previously to a gluten-free diet (low carb), I think you have your answer. However, if it IS DH, then what you have is true celiac, not just gluten sensitivity. Many of us here on the Forum have, in fact, forgone the testing due to a high incompetency rate among dermatologists (and I mean it!). Unless you have a real need for an "official" diagnosis, I'd recommend that you adopt a completely gluten-free diet and also eliminate iodine for a few months. You will feel so much better!
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#815195 Tom O'bryan & Cyrex Laboratories

Posted by on 31 July 2012 - 08:19 PM

I'd like to add, too, that Dr. O'Bryan provided everyone at the conferences where I heard him speak with his e-mail address so that if we wished further information, we could ask for it. I wrote him and specifically asked for information about a study he'd discussed, and he provided the information to me. Unfortunately, that was over five years ago, so I don't have the slightest idea where I put the information....but I remember being impressed that he took the time to get back to me. I really didn't get the impression that he was a scammer at all.
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#811529 Misdiagnosed?

Posted by on 16 July 2012 - 09:53 PM

First of all, IBS is a symptom, not a disease. It is very obvious that you have a problem with gluten. It doesn't matter if it's bona fide celiac disease or gluten sensitivity--you need to stop eating gluten. Stop seeing ignorant, uncaring doctors. We all stopped seeing them! You know what's best for you.....and, believe me, we also know what is best for you--avoid gluten for life. Welcome to our exclusive gluten-free club!
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#811516 Was I "glutened?"

Posted by on 16 July 2012 - 07:09 PM

Yes, it's possible that you were glutened via contamination. Hopefully, no damage was done. In about a month's time, if any damage WAS done, you'll notice symptoms of malabsorption of one or more nutrients: iron anemia, low B-12 (shortness of breath), stress fractures in your feet, etc. If you feel fine after a month, you probably did not cause any serious harm to your small intestine. Please don't stress in the meantime--chances are good that you'll feel okay after your immediate digestive problems subside. These occasional glutenings happen to us all....and most of the time we get over them quickly. You may feel a little dizzy, foggy-brained, have a headache, feel stuffed up, and perhaps have stiff joints tomorrow if you, indeed, got glutened....but, again, these symptoms will subside within a few days.
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#811507 Has Anybody Experienced Foot Pain?

Posted by on 16 July 2012 - 06:45 PM

Okay, I have the answer! I have the answer!!! Yes, I also experienced actual stress fractures in both feet only weeks after being diagnosed with celiac. They were, in fact, stress fractures....and I attributed them to low calcium (my teeth were totally decalcified) and perhaps low Vitamin D. However, fast-forward to two years ago when I got glutened after being gluten free for six years. A month after being accidentally glutened, both of my feet ended up with stress fractures....and I was clueless about which nutrients I may be having malabsorption issues with. It took me eight months to figure out that what I was experiencing was Floppy Tendon Syndrome caused by malabsorption of manganese (not magnesium) and zinc. What you're describing sounds very similar to the way my own feet felt. I began taking chelated manganese and chelated zinc, and within a week my feet began to recover. The pain was completely gone after two weeks. If I were you, I'd take calcium, magnesium (calcium should always be taken with magnesium), Vitamin D, chelated manganese, and chelated zinc....and I believe you'll feel right as rain in just a few weeks. Believe me--muscle pain and foot pain tend to indicate largely low manganese and low zinc.
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#811209 Ear And Jaw Pain Anyone?

Posted by on 15 July 2012 - 12:34 PM

What is interesting about jaw pain (and, yes, I'm referring to TMJ pain) is that I believe it occurs when the joint is too loose rather than too tight. I came to this conclusion when I experienced horrendous TMJ pain starting in the fifth month of each of my pregnancies. This pain coincided with the my body's increased production of prolactin, which occurs when the body begins to prepare itself for giving birth. The prolactin causes the tendons and ligaments to loosen up so that tissues in the pelvis can expand to allow the baby to pass through the birth canal. During the release of the prolactin, I would also experience pain in a knee joint that had been damaged due to an earlier fall (soft tissue injury). When the TMJ pain and knee pain occurred beginning at the very same time with each pregnancy, I thought, "Okay, this is the result of increased prolactin, which is loosening my joints, including the TMJ."

Because of this "ah hah" moment, whenever I experience joint and TMJ pain, I start taking chelated manganese, because it is the nutrient that keeps our ligaments and tendons from becoming floppy or loose (just like with prolactin). It's a cheap fix if this is what is happening to you. People are oftentimes deficient in manganese, and, of course, celiacs experience deficiencies more than the general population. I hope you'll give chelated manganese a try.
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#810940 Please Read & Respond

Posted by on 13 July 2012 - 10:22 PM

Hmmm....all I can say is that ALL my migraines disappeared after I went gluten free. I'd been plagued by migraines since I was 18 and I'm now 55.
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#809797 Need Help - Four Months Post-Diagnosis

Posted by on 09 July 2012 - 12:18 PM

Hopefully, a number of people will jump in with suggestions, but, in the interim, I'll take a stab at this. For a lot of us, healing takes a long time. My digestive complaints took a full 18 months of strict compliance with the gluten-free diet. That said, many people react poorly to a number of foods while they're healing, as though their immune system has gone wild and is rejecting foods that shouldn't bother them. It is oftentimes necessary to eliminate dairy and soy when first going gluten free to see if the digestive complaints resolve. Then you can reintroduce these foods later to see if you can tolerate them once your digestive system has had time to heal. For many of us, soy is never an option--we get really sick when we eat it. Some people are able to reintroduce dairy with no problem after a few months, and others remain dairy intolerant. Also, many celiacs cannot tolerate even certified-gluten-free oats.

If you end up eliminating dairy and soy from your diet and you still feel unwell, you might have to keep a daily log to begin eliminating other suspicious foods that may be causing you digestive distress.

Lastly, it's possible that you may be experiencing malabsorption of certain nutrients, which has resulted in causing your symptoms. Here is a list of nutrients and the symptoms of deficiency associated with each one:


Perhaps others have some good advice for you, as well. Good luck to you!
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#808901 Can Someone Explain The Iodine Thing?

Posted by on 05 July 2012 - 10:58 PM


Thanks for the personal reply--I hadn't expected to say anything, but I just had a chemo treatment, and afterwards I tend to feel despondent. Every time I look at the recent DH scars on my face, I'm reminded of how one misstep (glutening) caused my world to change forever.

Back on topic, though...you're right. My son and I both get DH on our faces and necks, and sometimes we also get it on one hand and the sole of the opposite foot. So, even though the medical literature states that the lesions always appear symmetrically, my son and I deviate from the "norm" in that we each get it on only one hand and the sole of one foot. However, the lesions do mirror each other on our face and neck--we get them in identical locations on both sides. Over the years, I've read many posts where the posters have indicated that the DH is on their faces, so I don't think it's as uncommon as the medical literature would have us believe. Quite honestly, I believe the medical community knows very little about DH (I know this isn't a surprise to you). Perhaps researchers should start with the personal stories related here on this forum (??). What an eye-opener it would be for them!

My friend, thank you for your concern and support...and very kind words. I hope that, with luck and Traditional Chinese Medicine (since modern medicine has failed me), I'll be able to contribute to this forum for a little bit longer. I find a lot of solice in the wisdom shared here.
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#808790 Does This Look Familiar?

Posted by on 05 July 2012 - 12:46 PM

Yes, to me it DOES look like DH, and the fact that you're also having gastro distress backs up the possibility that you have celiac.

Now, regarding the testing (and Squirmingitch, you're dear to me, but I don't agree with you on this one thing), if you can't see a gastro for some time because the referral process is slow, I would personally give up eating gluten to see if that's your problem. Unless there is a real reason for getting a definitive diagnosis, I can see no reason to continue to be tortured with DH and digestive issues. Testing is really only necessary for people who NEED a diagnosis, and then you have to remember that there's a high false-negative rate with the blood tests, the endoscopies, and the skin biopsies--especially in people who have the DH rash. So....unless you can be seen very soon, please stop eating gluten. And if you insist on eating gluten until you're tested, please stop eating gluten even if the tests come back negative....because then you'll have your answer.

We're in pretty much two camps here on the forum: keep eating gluten until you get tested, OR stop eating gluten and get your own ironclad answer without testing. Now, if a person doesn't have symptoms and thinks he/she might have celiac, that's another thing entirely--of course, they should get tested. However, if you're exhibiting symptoms that go away once you follow a gluten-free diet, what's the purpose in getting tested? Only you can make that decision.

By the way, once you go gluten free, also eliminate iodine from your diet for a few months in order to allow the DH to heal. Iodine can be found in iodized salt, salty snacks (chips, fries, crackers, popcorn, etc.), processed foods, seafood, asparagus, and some dairy products. Good luck to you!
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#808784 Seriously?

Posted by on 05 July 2012 - 12:35 PM

My favorites:

Me: No muffin for me--I can't have wheat.

Server: Oh, then you can have the blueberry muffins--they're only made of blueberries!

Me to yet another server: Do you know what kind of flour is used in your ______?

Server: It's white flour.

Yes, apparently, flour is made of only one thing: flour.
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#808754 Can Someone Explain The Iodine Thing?

Posted by on 05 July 2012 - 10:54 AM

I've been reading this forum for years, and I haven't read a single posting (except mine) where a poster mentioned that eliminating iodine ALONE could control DH. However, I'd like to point out that it doesn't appear that anyone ever made the connection whatsoever to iodine before discovering that gluten was also the culprit. Therefore, no one did what I did; namely, eliminated iodine exclusively without eliminating the gluten.

When I was 30, I developed DH after a stressful event. Even though I'd suffered from extreme nutritional deficiencies all of my life, I had no idea I had celiac. After suffering with the DH for four years and having dermatologists insist that it was simply an extreme case of acne, I read an article that explained that some people break out in itchy blisters when ingesting iodine. It also pointed out that iodine could be present in dairy products. I immediately eliminated all iodine sources, including dairy, and the DH cleared up immediately (except the horrendous scars took years to fade away). Many years later when I learned I had celiac, I read, "Celiac Disease: The Hidden Epidemic," by Dr. Peter Green, and that's where I read that there is a connection between DH and iodine/gluten. It finally clicked!

I was completely DH-free until my thyroid failed following a bout with chemo when I was 50. Now that I take thyroid medication that contains iodine, if I encounter even the slightest gluten contamination, I break out terribly in DH all over my face and neck. So, for me, iodine MUST be present in order for the DH to appear. Eating gluten while eliminating iodine completely protects me from DH outbreaks. Eliminating ONLY the iodine works for me, and it also works for my 25-year-old son. Once he learned that avoiding iodine completely could allow him to eat gluten without causing a DH breakout, he felt he could, in fact, occasionally cheat. He's acting stupidly, of course, but he serves as additional evidence that avoiding iodine alone (at least for some people) can keep a person DH-free.

Apparently, everyone is different....but I do wonder if everyone who has DH actually MIGHT be able to control their DH through solely eliminating iodine. No one on this forum will ever know because I can't see anyone wishing to ingest gluten again to test the theory. For me, however, the worst part of the equation is the iodine. As I've mentioned on other threads, the gluten lights the fire, but the iodine keeps it burning for months. I accidentally got glutened four months ago, and the DH continued to erupt for three months even though I'm absolutely certain that my diet was gluten free. It's because of the darned iodine in my thyroid medication that the DH just kept erupting, and now I have terrible scars to deal with all over again.

I know many of you will disagree that iodine plays such a major role in DH...but, really, how do you know if you haven't done what I have? And, no, I don't want you to test my theory. I'm just saying, you have no way of knowing one way or the other if what I have said applies to everyone. Only a study can prove it, and I can't imagine anyone wanting to participate in such a study. However, I tend to believe that BOTH gluten and iodine must be present for DH to occur, and if you eliminate one part of the equation completely, it cannot erupt. Again, just my own opinion.
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