Horrible

I had such high hopes of updating my blog at least every other day. Instead I’ve had two horrible, horrible weeks from hell which was topped off this morning with a doctor’s appointment.

I’m too tired, cranky and upset to go into details at the moment. But rest assured the blog is still here, its just tired cranky and too upset to bake. Via la chocolate bars and pre-packaged comfort food.

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Gluten-free shampoo

When I was diagnosed with Dermatitis Herpetiformis (DH) I immediately looked up the ingredients in all of my health care products (soap, shampoos etc) in order to determine if they contained any gluten containing products. I had to change my soap and my moisturizer but my other regularly used personal hygiene products were gluten-free! Hurrah!

Getting rid of the gluten-filled products and eliminating gluten from my diet vanquished the DH on my knees, elbows and face, but the DH on my scalp continued to worsen. Last week I had had enough and once again looked up the ingredients in my shampoo and conditioner. Low and behold those a**holes had decided to change the formula of my favourite shampoo and conditioner to include a wonderful gluten-filled thickening agent.

So I switched to Dove, which is supposedly gluten-free (I hope).

But Dove doesn’t keep my hair in check. The frizz free formula makes my hair frizz like there is no tomorrow (I have hair that is wavy to curly, it never does just one, parts of my head will be really curly, and others will just be limp and straight). I’ve had a really, really big afro all week. Its horrible. My hair is nice and clean and soft but POOF!

If any of you know a gluten-free shampoo that actually gets rid of frizz please let me know. I can’t take my hair being this big. I wish it were the 80s, I’d be so cool.

Please see this photo: http://www.nirvanix.org/hair80s.jpg

That is what my hair looks like AFTER I try to straighten. Maybe I should just cut it all off.

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Latest Celiac Research publish March 2, 2008 linking celiac and diabetes

I have taken this article from a press release published by Queen Mary, University London. The article in question was published in the March 2, 2008 edition of Nature Genetics.

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Scientists uncover further steps leading to celiac disease

Scientists who last year identified a new genetic risk factor for coeliac disease, have, following continued research, discovered an additional seven gene regions implicated in causing the condition. The team, lead by David van Heel, Professor of Gastrointestinal Genetics at Barts and The London School of Medicine and Dentistry, have further demonstrated that of the nine coeliac gene regions now know, four of these are also predisposing factors for type 1 diabetes. Their research sheds light not only on the nature of coeliac disease, but on the common origins of both diseases. It is published online today (2 March 2008) in Nature Genetics.

Professor van Heel and his team, including collaborators from Ireland, the Netherlands, and the Wellcome Trust Sanger Institute, first performed a genome wide association study in coeliac disease. Genetic markers across the genome were compared in coeliac disease subjects versus healthy controls. They then assessed around 1,000 of the strongest markers in a further ~ 5,000 samples. Their results identified seven new risk regions, six of which harbour important genes critical in the control of immune responses, highlighting their significance in the development of the disease.

Coeliac disease is common in the West, afflicting around 1 per cent of the population. It is an immune-mediated disease, triggered by intolerance to gluten (a protein found in wheat, barley and rye containing foods), that prevents normal digestion and absorption of nutrients. If undetected it can lead to a number of often severe problems among them anaemia, poor bone health, fatigue and weight loss. Currently only a restricted diet can diminish symptoms.

Professor van Heel said: “So far our findings explain nearly half of the heritability of coeliac disease – now studies with many more samples from individuals with coeliac disease are needed to identify the precise causal genetic variants from each region, and understand how these influence biological processes.”

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Celiac disease and intestinal parasites

Last week I wrote a post about the latest research in celiac disease. Today I received a comment about that that post from Kristina:

“I just read your summary of the latest CD research and am wondering what your thoughts are on this- my fiance and I lived in Nicaragua for two years. I drank water from the tap, from wells, whatever, no intestinal parasites, no giardia, no nothing for the entire time- whereas he (a non-celiac) was sick all the time (and he was careful about boiling his water). Our theory is that being a celiac, I have some sort of protection against amoebas and what not. What do you think?”

I thought this was extremely interesting. I wrote her back:

“I think that its possible that celiac protected you, but celiac disease is not the only explanation for your lack of tummy troubles. Consider:

— Many parasites would need something to latch onto in order to grow and inflict disease. If your intestines were not healed, there might not have been enough villi for the parasite to create a home, thus your illness may have prevented another illness.
— your digestive system may also have developed a unique way of dealing with changes to the intestine because of your celiac. Its amazing how your body will work around problems. Perhaps your unique work around helped you say healthy
— your stomach might have been sick, but you’re so used to feeling sick that you didn’t actually notice being ill. Your boyfriend who hasn’t had years of illness would never have experienced this type of feeling and therefore extra sensitive to the problem

— However —

– there is the possibility that you may never have actually ingested a live parasite. The incidence of parasites are actually quite low, its just the few that float about in the water are really good at causing disease and you usually only need one to get sick. Statistically you might have been lucky.
— you may have done a better job of disinfecting the water you drank than your boyfriend. My boyfriend is lazy and impatient — there is no question in my mind that he would have made himself sick!
— you may have genes coding for super parasite killing proteins or cycles that genetically pre-dispose you to survive parasitic attack.
— your stomach acid may be stronger than your boyfriend’s and you killed the parasites before they actually invaded your intestines.”

I also told her I’d do some digging to discover the real scoop. Here’s what I discovered:

Behera et al. Dig Dis Sci. 2008 Mar;53(3):672-9.

“The pathogenic parasites detected in (celiac) adults were Giardia lamblia 12 (24%), E. histolytica / dispar 5 (10%), Ancylostoma duodenale 4 (8%), H. nana 2 (4%) and Cyclospora cayetanensis 1 (2%). The pathogenic parasites detected in children with malabsorption syndrome were Giardia lamblia 8 (16%), Cryptosporidium 7 (14%), E. histolytica / dispar 3 (6%), Ancylostoma duodenale 3 (6%), Isospora belli 1 (2%), and H. nana 1 (2%). None of the stool samples from healthy controls were positive for Cryptosporidium spp., Cyclospora and Isospora belli. All the patients infected with intestinal coccidia were HIV sero-negative. Conclusion: Celiac disease is the most common cause of malabsorption syndrome in both adults and children. These people harbour significantly more pathogenic parasites and are more frequently colonized with harmless commensals as compared to healthy controls.”

I also found a study that suggests that the T cells that cause the villi to flatten in celiac disease are not the same T cells that flatten the lining in a giardia infection. Same symptoms, different pathway.

Unfortunately, that is all of the evidence I could find. This does not lead us to any conclusion, but it does give us another hypothesis to explain why Kristina was not ill — Kristina may have already had a giardia infection! If the numbers in this study are statistically correct, she has a 24% chance of being infected with giardia as I type. In fact, if the stats are correct, I have a 24% chance of being infected as I type! There is also a chance she has another intestinal parasite that was not allowing the parasites from Nicaragua settle.

I would like to point out that the study was small, and that the statistics might be much higher or lower than 24%.

This whole thing brings home something I’ve already said — I really have to get my microfora back in order! This can easily be accomplished through diet and by taking high quality probiotics on a regular basis. Please note that yogurt, cheese and other foods containing probiotics are NOT good probiotics.

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Gluten-free?

 

I have no idea where this photo came from. It was emailed to me. Made me giggle. I guess Mark Bittman does know how to cook everything!

 

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Why don’t people listen?

Now, I’m not bothered by people bringing in gluten filled desserts to share with co-workers. To be honest it gives me a medical excuse to say no to food that I really shouldn’t be eating anyway.

But I’m really, really fed up with having to repeat myself. \Every other day I have a conversation similar to the following:

  • Co-worker who has been told I’m a celiac at least a handful of times: “Shauna, why don’t you try a cookie/cake/samosa?”

  • Me: “Thank-you but I can’t. They do look delicious”

  • Co-worker: “Sure you can, they don’t have that many calories!”

  • Me: “I have celiac disease. I cannot eat anything containing gluten.”

  • Somebody else in the lunchroom “Do samosas/cakes/cookies contain gluten? Are you sure? I thought it was only bread and pasta that contained gluten”

  • Me: “I’m pretty sure your cake/cookie/samosa was made with wheat flour. All wheat flours contain gluten”

    Co-worker who brought homemade goodies “But I used white flour, not whole wheat!”

  • Me: “Actually, on a volume to volume basis, white flour has more gluten than whole wheat because the bran in whole wheat takes up room that would otherwise be taken up by the endosperm. But that really doesn’t matter as I really can’t eat even a milligram of wheat flour. Thank-you for offering me your baked goods”

At this point I try to sneak away to avoid more insanity.

I’m a biologist. I work with biologists. They must understand basic immunology and protein biochemistry. Why do I have to explain myself? WHY!

Its even worse if I bring in a sandwich on GF bread. I inevitably get somebody saying “AH HA! I caught you! You said you couldn’t eat bread and you are clearly eating a sandwich” which brings up the whole “No, I said I couldn’t eat gluten, which is in wheat, rye, spelt and barley. This bread is made out of (insert gluten-free flours of your choice here)”

*sigh*

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Latest Research On Celiac Disease

For those of you who are unaware, I am a biologist. Because of this I frequently read the latest scientific research papers on subjects of interest. Being a celiac, I am obviously interested in the latest developments in celiac research. While I know I cannot explain a lot of the research in layman’s terms (sorry, too much jargon) I can still let you guys know some interesting facts about celiacs you may not have known. If you have questions just ask. If you want sources, I have listed them at the end, just click the “read more >>” link.

  1. The lining of the small intesting in celiacs is inherently different in comparison to the lining of non-celiacs. Even if the disease is not active, the proteins in the intestinal lining have a different set and formation of carbohydrates (sugars). These sugars known form what is known as a glycosylation pattern on the surface of the intestine and are responsible for interaction with many body functions, which means that the interaction with other body functions and the intestinal cell wall is different between celiacs and non-celiacs. Exactly what this means is not yet known.
  2. All humans have bacteria in their intestines which help them digest and metabolize certain foods and nutrients. Celiacs have more rod shaped bacteria in their gut than non-celiacs. They have a different bacterial flora than non-celiacs. This difference is still evident even after being on a long-term gluten-free diet. I am definetly continuing my regimen of probiotics (BioK all the way).
  3. There is a hypothesis that the immune system in the intestine of celiacs have a hard time discriminating between pathogens and benificial particles (i.e. gluten peptides) which suggests that gluten might be mistaken as a pathogen. Although not proven, there is strong evidence to suggest that this hypothesis is correct.
  4. A group of researchers have determined that some non-human primates (apes/monkeys) are also celiacs. Specifically they found a group of rhesus macaques that displayed celiac like symptoms, including production of anti-gliaden antibodies, when they were fed gluten. The researchers suggest that these macaques could prove useful in further celiac studies.

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