Gluten Free Ladies

akmom

allurbaddays, thanks so much - your response makes me feel that I am not being a hypochondriac about this after all!

The doctor that did the biopsy was a general surgeon, not a gastro specialist. So I think I will follow up with my family doctor and ask what else he can do toward getting a diagnosis. (I've also had a rash on my elbow for years, doctors say it must be eczema but nothing will budge it - now wondering if it could be Dermatitis Herpetiformis.)

Cider8, I'm glad that going wheat-free has helped you so much. Just want to point out, though, that the severity of the symptoms (or lack of severity in your case) isn't necessarily an indicator of the amount of damage that could be going on inside if you do have celiac disease. I've read that some people with celiac are asymptomatic or have very mild symptoms. My nephew didn't have any symptoms at all - his disease was diagnosed when he started a new job and had to have a full physical, including bloodwork.

Sending warm thoughts and healing vibes to all

Momine

Essa, I make my own buckwheat pancakes, with some oats added, kefir, raspberries and walnuts. I have also experimented with buckwheat in other baked goods, and it seems to work well in anything raised with baking powder, like muffins, zucchini bread etc. The only thing is that the buckwheat can taste a tiny bit bitter in large quantities. But I find that some sweet spices will balance that out.

I am not so concerned about gluten, but buckwheat is low-glycemic and good for you in various ways, whereas white wheat flour is bad news even if you don't have a gluten problem.

allurbaddayswillend

akmom, You're not a hypochondriac - that bloodtest is positive. Something is going on and most likely it's celiac/gluten intolerance. Seeing a gastroenterologist is your best best and a dermatologist. If you do have DH, it's possible that the damage in your small intestine would be patchy - that's just the way of DH. A biopsy of the good skin *adjacent* to a rash or lesion is what should be biopsied for DH test, not the rash directly. "The skin sample must be taken from skin directly adjacent to the suspected dermatitis herpetiformis lesion, as opposed to directly from the lesion, since inflammation in the lesion can destroy the IgA deposits."  eczema is also associated with celiac along with a lot of other skin issues too though. You need to keep eating gluten for the most accurate testing except for the genetic.

more here: http://celiacdisease.about.com/od/commoncomplicationsofcd/a/Dermatitis-Herpetiformis-Diagnosed-With-Skin-Biopsy.htm

and here: http://celiacdisease.about.com/od/symptomsofceliacdisease/a/Skin-Based-Manifestations-Of-Celiac-Disease-Can-Take-Many-Forms.htm

good luck

akmom

allurbaddays, you are a gold mine of information! I am going to do some more reading and then call Monday to make another doctor's appointment.

Thanks so much for sharing your knowledge, and for posting the link to your blog. Can't wait to read it

allurbaddayswillend

akmom, my blog really fell by the wayside as chemo kept going, so keep your expectations low.  I only started it to share things that I found myself reposting or saying in multiple forums (live or online) so there wasn't a lot to it and I found myself too embarrasingly rambling with the chemo when I tried a couple posts. I have a handful of my own recipes with some good photos to post as I come out of the chemo fog so I am looking forward to that again in the next couple months. I'll certainly leave it linked here so that over the years anyone in similar circumstances can find me... even if my blogging isn't prolific or what have you.

akmom

It's still a good avenue for you to express yourself - prolific isn't necessarily good, right? Reading about others who have been through what we are experiencing really does help us get through our own bad days. Hence this forum

I found plenty of food for thought on your blog, sure don't think you should be embarrassed by anything on there!

Hope everyone has a comfortable weekend. xo

flannelette

Hello , please excuse for butting into this nice warm chat - I just saw this thread. I just read Wheat Belly. I do have a lot of fat around the middle. I don't believe I have any celiac issues. but I would love to lose the visceral fat. The author seems to be saying that modern wheat is so modified it's glycemically through the roof, even whole wheat. So, someone in my area grows Red Fife - (I think that's the name) - the kind we had 100 years ago. do you think that making my own bread from that grain, which has not been modified ad infinitum, might alllow me to lose fat aroud the middle? I guess i should probably see if the farmer knows its glycemic index. I have also seen some recipes by the gluten-free goddess, who tends to avoid all the high-glycemic starches that are common gf substitutes. but, about weight loss - is it the gluten, or is it the modern form of wheat which leaves you craving for more? or is it carbs?

Edited to add I eat a lot of bread and wheat products, am usually insatiably hungry and oftyen have low-blood sugar so do stay away from sugary snacks, such as cookies on their own, and have excema on the tops of my feet, the residue of an insane bout of neurodermatitis during which I was 100% itchy all the time and looked like a plague victim all last winter.

thank you for any input.

dlb823

flannelette, I'm going to venture an opinion that we're all a bit different when it comes to what sets off our hunger, or what makes each of us hold onto fat in a specific area, so that there isn't a simple or universal answer (e.g. carbs vs. wheat vs. gluten vs. maybe even the herbicides & pesticides with which grains are grown) that applies to everyone.  And sometimes it can simply be the quantity someone consumes that's the problem. 

If I was in your situation, I think I would try a complete wheat elimination diet for at least 3 or 4 weeks -- longer if you can stick with it -- and see if you get improvement in any of the things you're concerned about.  Then maybe try adding a little of the Red Fife wheat back into your diet, because it should be healthier for you than the more commonly available wheats.  But unless you totally eliminate wheat for awhile and then add the Red Fife back in, you won't know if it's all wheat or just certain wheats that are a problem for you, because you may not notice the difference as readily.  I'd also watch the quantities, as it's easy to consume an awful lot of wheat between breads and other breakfast items, pastas, pizza, etc.

The other thing you might consider doing is getting the IgG Food Antibody Assessment test done.  It's a simple (albeit slightly pricey) blood test that naturopathic doctors offer that tests for allergies to all sorts of foods and environmental things.  It's how my naturopathic doctor confirmed what I always knew was a problem with wheat.

If you don't want to do either the elimination diet or the testing, then Red Fife wheat is probably much better for you than other common types of wheat flour.  But simply switching probably won't help you as much as eliminating wheat (or all gluten products if you can do that) -- and seeing how you feel when you're totally off them.       Deanna

Momine

Flannelette, my mother has pretty much stopped eating wheat. Instead she eats rye bread, made from wholegrain rye flour. I do eat wholegrain wheat bread, but I eat very few other "straight" carbs. In other words, I get carbs from things like mushrooms, nuts, veggies, but don't eat sugar, rice, potato, pasta etc. It takes a bit of getting used to, but once you are over the initial adjustment it is actually pretty easy.

allurbaddayswillend

Flannelette, please first look at the list of most common symptoms here: http://www.celiac.org/index.php?option=com_content&view=article&id=6&Itemid=12

It is not all inclusive. About 20% of adults diagnosed with celiac disease are asymptomatic - that is to say have no symptoms. While I agree with a lot of what Deanna said about wheat and doing a trial, please be aware that once you have stopped eating gluten it is harder to get accurate testing for celiac disease but since you've read Wheat Belly you know there's more than just celiac on the gluten sensitivity spectrum. Gluten is in wheat, rye, barley, conventionally grown oats, and most of their products including beer, malt vinegar, most soy sauces, canned soups, and more. It's ridiculous. If you only cut out wheat but don't cut out all the hidden sources of gluten and yet have a gluten sensitivity of some sort, you may not notice any difference. There's a fairly short but fairly good gluten-free diet guide here: http://www.celiac.org/index.php?option=com_content&view=article&id=138&Itemid=239

Note that products produced "on equipment that also processes wheat" are often cross-contaminated to the point of making celiacs continue to have symptoms and/or damage if they are asymptomatic.I have lost a fair amount of weight after going glutenfree. I am a diagnosed celiac who was overweight at the time of diagnosis. In fact, my diagnosis was missed for decades because I was overweight. I think the weight loss was just because I was healthier. So many things improved, my energy levels, my mood, my thinking ability, my skin conditions. I was able to exercise without being completely wiped out and completely famished afterwards. I think my "metabolism" changed. I think because I was finally getting nutrients I needed, other organs and glands that weren't specifically being attacked by my immune system were healing too. I also suspect that some of the deficiencies may have contributed to my breast cancer.

Let us know what you do and how it works out for you.

flannelette

thanks for all your well-informed advice, ladies! I know I don't have the skin manifestation of celiac (can't remember the name right now) as my skin was biopsied.

I've never had any in-depth care by a naturopath, no tests for sensitivies. but my metabolism certainly is weird and it all came on at age 40 when I had chronic fatigue syndrome, gained 50 pounds in about 5 months due, I now believe, to hyper insulinism, and my blood sugar goes up & down wildly unless I totally stay away from sugar and went from being a skinnny thing to lots of weight around the middle.

So maybe after Xmas, when I have some $$ and the xmas goodies are over, I'll finally seek out someone who might do some tests.

Thanks for taking the time to help set me on the beginnings of a probably long-overdue path.....

dlb823

On Facebook this a.m....  Udi's Gluten Free Foods asked ppl to name their favorite gluten-free blog, and I was surprised at the number of blogs listed.  I haven't made the time to look at any of them yet, but thought you all might want to check them out, too.  

For anyone isn't on FB, I can come back and post a few links after I check them out later.      Deanna

glostagirl

Thanks Deanna, I'll check them out, every bit of info is helpful.  I recently had an HD rash outbreak on my face and found Benadryl helped it subside pretty quickly.  

It's so hard to avoid gluten around the holidays, all those tempting treats.  My family's traditional Christmas brunch is loaded with gluten!   I feel ill just thinking about it all.  I find much less of a craving for those types of foods, when the results of eating, especially a sugar-gluten combo, almost immediately results in a herpetiformis rash on my face, ugh.

Happy gluten free holidays everyone!

Ginger48

I have been off gluten for over 6 years and have to eat it in preparation for the celiac test. Anyone know how long I will need to eat it to make it a valid test? I am waiting for the dr to call me back but wondered if anyone else has had to do this?

akmom

Hi Ginger, I haven't personal experience as I had a blood test before going gluten free, but I've read that you should ingest gluten for several weeks prior to testing. Are you having a blood test, or small intestine biopsy, or both?

http://celiacdisease.about.com/od/diagnosingceliacdisease/f/Gluten-Challenge.htm

River_Rat

Ginger, I wasn't tested and I was told I'd have to eat gluten for at least a month before being tested.  I declined testing and my PCP is ok with that as long as I stay on a gluten free diet.

dlb823

Ginger, I'm just curious what the benefit is of knowing if you're celiac is vs. being (I assume) symptom-free right now?  Just from having occasional flares, I can't imagine knowingly eating something that will cause that much pain and damage to your intestinal track -- if that's why you went off gluten in the first place.

I'm also wondering if you could get enough information from the IgG Food Antibody Assessment, which is a blood test that was able to tell my naturopathic doctor that I was 3+ (highly sensitive) to wheat, but  do not have celiac, which evidently it was able to differentiate.  And I'm not 100% sure, but I don't believe you have to have actually eaten gluten (or at least not much) prior to that test because it also tests for a myriad of other antibody reactions, including foods I hadn't eaten and plants I'm not around.     Deanna

Ginger48

Thanks for your answers.

Deanna- I have the same question for the doctor. I am currently having lots of digestive issues. I just had a GI series which showed that it only took 15 minutes for the barium to go from my mouth to the large intestine. It usually takes 3-5 hours. So I don't seem to be getting any nutrients from my food. Also the X-ray showed nodular mucosal fold and thickening in the body of my stomach so they want to scope and possibly biopsy it. I am trying not to worry about it.

I get sick at the least amount of gluten so I am not sure I can or want to do the challenge.

allurbaddayswillend

Hi Ladies,

Ginger, I tried to do the challenge but couldn't stick with it. My biopsy was slightly celiac, enough for the Dr to dx me based on it, my positive response to the diet and that I have several relatives (1st and 2nd degree) officially dx'd with celiac. I have dermatitis herpetiformis however so that made it easy to dx me too.

I posted a new recipe on my blog. It's not the new waffle recipe but Baked Cream of Buckwheat. It's my oatmeal alternative. We seem to have adapted to our internet issues so I finally have enough bandwidth to upload some photos again. yay!

allurbaddayswillend

I did it! I got my Glutenfree Buckwheat Belgian Waffle recipe on my blog. http://disasterkitchen.wordpress.com/2012/12/16/glutenfree-buckwheat-belgian-waffles/

I'm pleased that my photography is improving and that I have the time and bandwidth to get this going again. I'd love to hear how the recipe works for anyone else.

akmom

Yum! Wish I had a waffle iron... but I will try the baked cream of buckwheat recipe, and maybe I'll attempt pancakes using your waffle recipe. And thanks for your recommendations regarding preferred brands of flour, very helpful.

Momine

I use buckwheat for pancakes. I am not gluten-free, but buckwheat is much better blood sugar-wise than the alternatives. It tastes good too.

So I use 1 cup buckwheat flour, 2 teaspoons baking powder, 1 teaspoon cinnamon, stir together, beat separately 1-1.25 cup of kefir with 2 eggs, stir into flour mix along with a small handful of chopped or sliced nuts and about 1/3 cup blueberries or raspberries (can be frozen ones straight from freezer). I don't put any sugar, but do sometimes drizzle a teaspoon of honey over the plate.

River_Rat

Momine, that sounds wonderful. I don't think I'd need any sweetener.  I don't like things very sweet so the berries should be enough and I love nuts in my pancakes.  

QuinnCat

Wow - great thread.  I'm kind of new to this world of gluten-free, but through a series of events, I have arrived here.  My whole life has been C & D, bloating, gas, etc.  Not until I saw a new PCP, has any doctor suggested a gluten intolerance.  After my first colonoscopy (6 years ago), the doctor suggested I had IBS - my perastalsis was out of coordination.   Could this be another symptom of gluten intolerance?

Fast forward to taking these hormonals (Exemestane) and seeing once again, my CRP and hsCRP off the charts in addition to stiff joints (connected? - I don't know).  The stiff joints were definitely being caused by the Exemestane and the blood work indicated high risk for stroke and/or cardiac event. I do have high cholesterol and high BP, and finally the doctor is treating my cholesterol (she didn't want to start during chemo).  I've been on BP meds for 1/2 year and all is good there.  (Jumping ahead...Two weeks after switching my diet, it was the lowest reading I've ever had in my life, albeit with meds, but the lowest with meds, even.)  So I wondered what I could do for this inflammation and ordered this book "Meals That Heal Inflammation"  by Julie Daniluk, R.H.N..  Guess what -  her diet is gluten-free.  It is also dairy free, though not vegetarian.

On impulse, about the time the book arrived, so did my present to myself - a Vitamix.  All of sudden, eating fruits and tons of greens, eating grains, nuts, was so easy.  If I had only known I would have gotten one of these beautiful machines years ago.  Automatically, I became gluten-free, but additionally sugar free, dairy-free.....I will eat salmon and have had turkey...going on 3 weeks and three things I've noticed.....1) I'm allergic to sesame seeds, and I love Tahini- boo hoo  I get congested not long after eating  2) I've lost weight without trying and 3) No more C&D...can I say that again - no more C&D.  My whole life has been C&D to the point I thought this was a normal thing.

Ofcourse, I've also gotten rid of dairy, not just gluten, so I don't know what is really going on without reintroducing something.  btw, the author of this book eliminates the nightshade family the first 12 weeks (eggplant, tomatos, etc.) and yellow lights them, for reintroduction later.  The other things - dairy, sugar, gluten - are red lights, period.

When my doctor mentioned gluten-intolerance to me, I said to her "isn't this just a fad?"  This is having been in Portland for my BC and seeing "gluten-free" everywhere and possibly seeing one too many "Portlandia" shows .  She firmly said "this is a real thing."  She is young and probably not long out of medical school and is probably the most knowedgeable PCP I've ever had about pharmas etc.  I'm becoming a believer now.

Edited for...I wanted to add.  I've always thought this was a come on too - "this will elminate your food cravings."  It is true, I no longer look at a chocolate bar and have to eat it all.  The day I started eating this way, I stopped drinking coffee and never missed it (I was at the espresso drive through almost every day!)...and most of all, I don't feel hungry all of the time.  Unfortueately, the exemestane is still having it's way with me....stiff joints and all, though the hot flashes have gone away.

Blessings2011

Kam170 - what a great post!!! I am soooo happy for you!!! 

I, too, love my VitaMix....and since I am now back on solid foods after my big weight loss, I am VERY careful about what goes in my mouth.

For the first time in my life I feel like I have control over what I eat. It sure makes a difference!

Anonymous

Kam

I'll have to look for the article I sent email to all my friends - on WHY the wheat being produced today is SO DIFFERENT from what was grown years ago.  Really, only a very few years ago.  Definitely more and different proteins, especially gluten.  Also think as we get older, our bodies change, and we need to be very, VERY aware of what we ingest.  I bristle when I see "ads" about how "healthy" yogurt can be -jeeez, the preservatives in even the "healthy" ones would make me sick.  Being gluten free and then dairy free is the BESTS gift I've ever given myself.

Again suggest reading Dr. David Kessler's The End of Overeating - if you want to really understand food, and what is being called food today.  Mark Bittman also has very good blogs, articles about this. And of course, the GodMother of Sanity on this is Alice Waters.

dlb823

Sunflowers, I think I know the article you're thinking of ... maybe written by Dr. William Davis, the author of Wheat Belly?  I couldn't find it quickly, but here's an article that references what it's about:

http://www.naturalnews.com/037133_wheat_gluten_poison.html

And here's an interview with him that touches on it:  http://wellnessmama.com/3486/do-you-have-a-wheat-belly-interview-with-dr-davis/

And here's another good one that explains hybridization, and why some can tolerate hybrid wheat better if it's been sprouted or baked as with sourdough.

http://www.thehealthyhomeeconomist.com/hybrid-wheat-not-the-same-as-gm-wheat/

Merry Christmas, everyone!    Deanna

Anonymous

Yup, think this might be the same davis

http://www.cbsnews.com/8301-505269_162-57505149/modern-wheat-a-perfect-chronic-poison-doctor-says/

It seems to be a lot more than just "gluten" now.  Don't know if this also applies to barley, rye, but I avoid all of it.

QuinnCat

I just found out last night that it is illegal to sell true raw almonds in the United States.

http://www.livingnutz.com/2012/02/federal-judge-upholds-almond-pasteurization-law-again/

Is nothing sacred?  I made a pie crust with almond meal and oatmeal, using what I thought were blanched raw almonds, only to find out from the lifelong vegan that she has to source her almonds outside of the US.  I'm new to this, so just finding the landmines.

Very interesting about this other byproduct of engineered wheat - could explain why bread can be so addicting, hey?

zogo

I went to a seminar by Dr William Davis. The science behind his recommendations is very convincing.  I even tried to get an appointment with him after my bloodwork showed high cholesterol. (I'm in the city where he practices, although he's not taking new patients). I'm trying to avoid statins like the plague, as my mother had muscle deterioration on them. Of course my GP immediately prescribed a statin and I refused.

I have been grain free/ sugar free (basically low carb) for a year and a half now (well before his book came out).  It is not that hard and I feel much better.