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cyberprof

Member Since 16 Feb 2007
Offline Last Active Nov 05 2012 03:02 PM
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#832802 New Here With A 13 Year Old

Posted by cyberprof on 27 October 2012 - 09:54 AM

Glutenfreex4,

I agree with gottaski - you should get levels tested for Vit A, Vit D, B Vit and Iron. Calcium too if possible. Even if he's not deficient, I don't think taking a Carlson's capsule would be harmful. You can look up reputable maximum supplementation levels of specific vitamins via sites like National Institute of Health (US) or Mayo Clinic.

If he's not dairy intolerant, a Boost drink daily is a good idea.

Regarding the recipes, the carrot cake, cornbread and enchiladas aren't really "mine" - I make the Gluten Free Goddess's version found here: http://glutenfreegod...arrot-cake.html And the cornbread is hers too but I make it without the green chilis: http://glutenfreegod...een-chiles.html
Chicken enchilada recepie: http://glutenfreegod...enchiladas.html (Sorry to call them "mine" but she has great recepies that have become family legends. And her dark chocolate brownies are to die for - even for gluten eaters.)

I make chili from an old Betty Crocker cookbook and I'll post that later.

What kind of curry does your family like? Spicy? Authentic? With cream or coconut milk? I have several curry recepies.

Also, I'd like to put in a plug for Stephanie O'Dea's "A year of slow cooking" blog - she cooks only gluten free and these are great family meals. http://crockpot365.b...ili-recipe.html

Good luck and let us know how it goes.
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#817958 Seattle Doc

Posted by cyberprof on 15 August 2012 - 12:37 PM

I go to Susan McCormick MD at Virginia Mason. I went to see her after seeing another GI doc at VM who diagnosed me. Since I was only Marsh I, he said that I "didn't have to be strict on the gluten-free diet" since I wasn't showing much GI damage and he also refused to order biopsies for colitis when he was ordering my age 50+ routine colonoscopy.(I wanted to rule out colitis, as celiacs have a higher risk of getting some types of colitis.)

At VM, the coloscopies and Endoscopies are pot-luck, you get whoever is on that day and that's how I got my first GI doctor. When Dr. McCormick saw me to do the colonoscopy, the first words out of her mouth were "We're going to biopsy for colitis, because with celiac you're at higher risk." I had been planning to ask/plead for it but she beat me to it. So she may not be a specialist but she is aware of celiac and adults. When I saw her for follow-up, she wanted to know my symptoms if I get gluten accidentally and asked other health questions related to celiac (like osteoporosis) and ordered vitamin screening for deficiencies, 5+ years after diagnosis and gluten-free diet.
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#805536 Gastroenterologist Said Something Confusing Yesterday..

Posted by cyberprof on 22 June 2012 - 01:45 PM

Amberlink, I hope you get some relief soon.

Microscopic colitis is a large-intestine disease that is possibly related to or caused by celiac, according to my GI. When I had my routine age 50+ colonoscopy, she specifically biopsied for it, even though I have minimal celiac symptoms now that I'm gluten free (only when glutened).

Ulcerative colitis and celiac can also happen together...not sure if there's a cause/effect thing there but certainly anyone could end up with both celiac and UC at once.

Crohns is another separate disese of the large intestine, and can also coexist with celiac.

So, yes, you should try the med the doc proscribed and then if it's not better, a colonoscopy would seem to be a likely step. All of the above can cause celiac-like symptoms.

Edited to add: Looks like Ulcerative colitis can also be linked to celiace (not a big surprise). http://en.wikipedia.org/wiki/Colitis This entry gives some ideas on what your problem might be based on symptoms. And yes, he should do an endoscopy w/biopsies while you're undergoing the colonoscopy - very easy to do both, since both require the same drugs and colonoscopy prep covers everything needed for endoscopy prep for the patient.
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#800463 Went gluten-free In Support And Found Out You Had It?

Posted by cyberprof on 03 June 2012 - 08:56 PM

srall, I had a similar situation with my son, but he had less overt symptoms. Sick all the time (colds, flu), not "hardy" like my daughter or my siblings when we were young. No stamina and cranky a lot. D a lot, but not where the doc would think it was bad. Lots of mouth ulcers. So thin. But he didn't complain about stomach problems. When he was 13, I told his doctor that there was something wrong, but I didn't know what. Doc tested for diabetes, leukemia, thryoid, iron deficiency - nada.

A year after I went gluten-free, he was 15 and not in puberty and at my urging he went gluten-free. What a difference! And the thing that made it all worthwhile was his statement: "I didn't know that eating wasn't supposed to hurt." So for 15 years, the poor kid had pain after every meal and thought it was NORMAL. So, yes, I think that my diagnosis was a blessing and I would go through it all again to help my son. And my daughter too, now.
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#785935 Anyone Been To Five Graces Restaurant?

Posted by cyberprof on 07 April 2012 - 10:05 AM

We had a nice time. Everyone liked their meals.

I was the most happy because I didn't have to cross-examine the waitstaff and say "Are you sure this is gluten-free?"

And I haven't had crab cakes in a restaurant in five years: They used to be a hobby of mine. Where ever I travelled, I'd always order them. I've had crab cakes in Russia, NYC, Oklahoma City, Chicago, San Francisco, etc.

Julie, in answer to your question, they have a full explanation on the website where you can fill out a questionnaire about your restrictions and they will work to get you a meal that you/your daughter could eat. My son and sister-in-law omitted the goat dairy from their meals with no problem. I think that if they had a menu with no dairy, eggs, flax, wheat, soy, corn, peanuts, fish...well there wouldn't be much demand for a restaurant like that would there? They seem knowledgable and they certainly want to meet the demands of the intolerant in the population, so I hope they do well.
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#773540 "borderline" Celiac

Posted by cyberprof on 14 February 2012 - 07:35 PM

My endoscopy results were fuzzy, with an unusual concentration of lymphocytes but barely any blunting of the villi.

My tTG antibody test was a 10, whereas the cutoff is 8. (In other words, it's barely positive)
The DNA Test came back heterozygous for DQ2 (if I remember correctly... I don't have the sheet in front of me, but the doctor said it have me a moderate risk of Celiac (1:35))


I had similar biopsy results...it's Marsh 1 on the Marsh scale, with the four Marsh stages as follows:
Marsh stage 0- normal mucosa
Marsh stage 1: increased number of intra-epithelial lymphocytes, usually exceeding 20 per 100 enterocytes
Marsh stage 2: proliferation of the crypts of Lieberkuhn
Marsh stage 3: partial or complete villous atrophy
Marsh stage 4: hypoplasia of the small bowel architecture (from Wikipedia http://en.wikipedia....Coeliac_disease)

If someone is Marsh 1, why wait until they are Stage 3 or Stage 4 and it takes 4-5 years to recover? Perhaps medical science will come up with another explanation in the future, but I got a celiac diagnosis with Marsh 1, negative blood work and tremendous response to the diet (plus positive genes). With the health problmes I had at Marsh 1 (resolved now) I would have hated to wait to get to stage 3 or 4. However, my son's GI says that some GI's don't consider Marsh 1 to be celiac. Boo Hiss.

Ctenny, I'm glad that you accept that you are celiac and I wish you good health.
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#772982 Multiple Myeloma

Posted by cyberprof on 12 February 2012 - 04:38 PM

Here's the link that I posted that has a lot of articles and information.

http://www.celiac.co...oma-and-celiac/

Also, MM is not a death sentence as it was 10 years ago when my husband was diagnosed. Treatments are much better.
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#772980 Multiple Myeloma

Posted by cyberprof on 12 February 2012 - 04:35 PM

My grandmother has been diagnosed with multiple myeloma. As I am reading thru the information everything sounds like my own health except my calcium level did go down when I went on a gluten-free diet. I am planning on asking my doctor to test me for my own peace of mind. However, I was wondering if anyone knows about multiple myeloma and knows if there is a connection to celiac?


Yes, there is some connection. Not all celiacs get MM (multiple myeloma) and not all MM patients are celiac but there may be a link. I've posted on it a lot here...do a search for the official PubMed type articles that I researched.

****Important***** You should tell your grandmother to get tested for celiac.

The most telling article was the observation that on a gluten-free diet, some (but not all) MM patients will go into remission. My hubby has indolent (dormant) MM and he is on a gluten-free diet and his blood work has been steady for 5+ years.
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#770200 Happy (Re)Birthday To Me!

Posted by cyberprof on 01 February 2012 - 09:35 PM

Happy Birthday to me! And Happy Re-Birthday to me too! Thursday is my birthday – yes, I’m a Groundhog. And in two weeks, it will be five years since I was diagnosed and went gluten-free. I have to say that this is one of the best things that has ever happened to me, after the birth of my kids.

Since diagnosis, I’ve adapted to eating gluten-free and manage most situations pretty well. Business meetings and travel are still a challenge, but not unmanageable. I’m known for having both a KIND bar and a LARA bar in my purse at all times.

My recovery was pretty easy and a lot of problems cleared up unexpectedly. What had become daily episodes of gas, burping, indigestion, stomach gurgles/rumbles, big D, nausea - all gone. Canker sores – a monthly or weekly occurrence – gone except for after glutening. Arthritis in knees, hips, spine, feet…90% gone. Anxiety – mostly gone. Plantaar faciitis, a problem for three years, gone never to return. No more dental cavities. I’m overall healthier and when I wake up in the morning, I no longer feel like I’ve been hit by a truck: Prior to diagnosis, I just thought I was feeling old (at age 47).

I think I became celiac as a kid but the real symptoms started showing up at age 17: One doc thought I had rheumatoid arthritis and did lots of tests for that when I was 18 but ultimately said that I didn’t have it but didn’t know what I had. He was pretty close, since RA is also an autoimmune disease. So that’s 30 years undiagnosed, with docs telling me during that time that I just had a “sensitive” stomach and implied that I was a hypochondriac. But I had it easy compared to some on here.

I was really oh-so-lucky to have had two relatively easy pregnancies and two healthy babies. The greatest benefit of my diagnosis is that my son was able to go gluten-free (and dairy-free) at age 15 and is now happy and healthy – 6’3” and in college. He was spared the 30+ years of ill health that I had. My brother tested negative but went gluten-free anyway and is enjoying better health.

Right after diagnosis, I found that my reactions to accidental glutening were intense and made me miss work and stay near a toilet for 2-3 days. Now, I consider myself pretty sensitive so I can tell 30 minutes after eating that I had some gluten as a result of cross-contamination: The reactions are some D but not enough to miss work or make me miserable. I have forever sworn off buffets, even if the chef tells me it’s ok and I don’t eat food that friends prepare, with a few exceptions (mother, MIL, sister).

I love to cook and have mastered gluten-free cooking and baking as much as I need to. I make some things that are just great – not as substitutes but good in their own right – pizza, brownies, carrot cake. I don’t bake bread often but find that Rudi’s bread and Udi’s hamburger buns are good for everyday use. I still miss croissants, puff pastry and phyllo dough…though not enough to think about it very often.

I’m really thankful for this board as it’s a wealth of information and a good place to hang out with some very knowledgeable people. Especially long-timers like Ravenwoodglass, Lisa, Jerseyangel and others I’m sure that I’m forgetting…you’ve helped me immensely. And thanks to Scott for starting this board.

I’m posting this as a celebration for me but also to encourage anyone at the early part of their celiac journey.
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#764109 Why Do I Now Get Sick From Gluten When I Didn't Before Going Gluten Free

Posted by cyberprof on 11 January 2012 - 01:15 PM

BettyG and JulieAC,

I hope you both will stick around. While I totally disagree with some of the punative responses (a slap is never what I would think even in the abstract) but I do understand where they are coming from:

Untreated celiac = pain and needless suffering.

Eating wheat as a celiac while pregnant is a huge risk, both to mom and to baby.

There would be similar comments on a baby forum if a pregnant woman was admitting to drinking alcohol in a bar. What JulieAC and other newbies don't know is the number of babies miscarried or still-born by women on this forum and that's the reason for the response. We even have members who were born of untreated celiac mothers, and who were born with scurvy (malnutrition) as a result.

Internet forums by their nature always have some sort of controversy as not everyone will agree. But the knowledge available on this board, IMHO, is not available anywhere else.
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#763948 Infertility?

Posted by cyberprof on 10 January 2012 - 08:03 PM

Here's what I find so frustrating - I cannot get a doctor to acknowledge any kind of link between gluten and fertility.


I'm not sure anyone has proved a gluten connection but there is a celiac and/or gluten-intolerant connection: It took me all of FIVE minutes to find the following peer-reviewed research papers, which should be official enough to show your doc.(Docs tend to dismiss anything that is not peer-reviewed.)

http://www.ncbi.nlm....les/PMC1383343/

http://www.ncbi.nlm....pubmed/15548153

http://www.ncbi.nlm....pubmed/20537625

http://www.ncbi.nlm....4?dopt=Abstract

http://www.ncbi.nlm....pubmed/18368491

Going off gluten is a good step, even if one isn't diagnosed. A gluten-free diet can be as nutrient-dense and healthy as a gluten-containing diet (in other words, eating gluten-free isn't a deficient diet in and of itself.)

From my experience, I had celiac symptoms since I was 16 or 17 and had two totally healthy babies and no miscarriages even while on gluten. My point is not to freak out if you are newly gluten-free...give it time.

If your periods are irregular or if you've had miscarriages or inability to get pregnant, go strictly gluten-free and try not to stress - though I agree it is stressful. Good luck to everyone!

P.S. Make sure to read the last link above.
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#762107 I Had Hoped To Never Return To This Place

Posted by cyberprof on 03 January 2012 - 07:46 PM

Yes, thank you Skylark (you are so good about posting journal articles for us), :) and I have read some abstracts of studies linking the two AI diseases, however...

I wanted the poster to tell us where she found the information that is

behind her statement that PSC is CURED by a GFD.


Unfortunately, I found nothing to support this claim.

But YES!!! Suzanna needs to stay off gluten to stop the malabsorption and autoimmune attack and keep her body in optimal health.


I too also read the articles earlier this morning and agree that there is no evidence that going gluten-free cures the PSC.

BUT...medical science isn't very knowledgable about PSC (compared to some other diseases) and IMHO doctors don't know much about celiac. It might be that being gluten-free would reduce the inflamitory process enough so that the PSC progression slows or stops. And if Zus gets a new liver, wouldn't a gluten-free diet keep her body from damaging the new liver?

Zus, I really feel for you. Not to harp on other posters, but to say "anything you want gluten-free you can make" in regards to dinner rolls underestimates the impact of avoiding gluten when one is out and about -PTA, business events, dinners at other people's houses and parties.

But, you have young children who may inherit celiac and/or the liver condition, and if nothing else, you can show them how to accept adversity with grace and strength. As their parent, that is up to you. And you want to be around for them for a long time. (Trust me, my kids are almost 19 and almost 21 and they still "need" their mother.) Going gluten-free is the best way to make sure that you don't get lymphoma or liver cancer or other cancers, and to preserve your current liver for as long as possible and finally to maximize the sacrifice of a new, scarce liver from a deceased donor.

Hang in there!
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#761713 I Had Hoped To Never Return To This Place

Posted by cyberprof on 02 January 2012 - 04:30 PM

Zus, I truly feel you.

Watching other people (even my daughter or other relatives) eat my favorite Pagliacci Pizza - unbearably painful.

Walking into a PTO meeting, wedding, business event, Christmas party and watching every.single.person.there eat what they want, without thinking about it - excruciating.

Knowing that I'll never be able to travel to France or Italy or China and eat with abandon like others travelling - too sad to think about.

Walking through an airport or food court and not want to take a risk and being so hungry - annnoying.

Missing the care-free way of eating that 90% of people have - frustrating.

But...

Being at peace with it - priceless.

It is grief and it is something that all of us have to deal with at some time. Alcohol, cigarettes, too much sugar, too much fat. Or the reverse - too poor to obtain good, sufficient food. Many humans have some limitations. But celiacs have more grief than others because it is a wheat-full society. And the poster above that said if she was alergic to peanuts, she bets that most hosts/hostesses wouldn't serve PBJ or have peanuts on the table during the party - so true. What an interesting statement. Wheat is different and we are expected to suck it up. Now the above statements are/were true, but I have achieved peace with it. I carry nuts, LARA bars, fruit and though I hate missing out on party foods, it doesn't end up ruining my night anymore but it is a mental effort.

Others have good ideas about counseling but I think the best would be a support group for people with potentially fatal diseases - your liver grief and your celiac grief are intertwined IMHO.

Best wishes to you.
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#735952 Spouse Is Nonsupportive

Posted by cyberprof on 03 October 2011 - 10:37 AM

Thanks everyone for your responses. I appreciate it so very much :D I know I have to do something about this mess, I hate feeling crappy. I know it's up to me to get things going with my doctor. I have to get over my "fear" and just make the call and get an appointment.

GlutenFreeManna--I think you are on to something. I keep pluggin away even when I feel absolutely awful. It may take me actually retreating to bed (more often) or being forgetful with the toilet in order for him to actually see what is happening with me. I work incredibly hard to go to work, attend my kids sporting activities, basically keep the house going even on my bad days. Maybe I need to let some things go and he will get a better picture of how I feel. Or maybe he will get mad that things aren't done around the house. I don't know how he will react, but it's a place to start. I have NEVER, EVER been one to "rock the boat" but my health has got to improve.

Thanks again everyone, it is beyond wonderful to have some support. Something that I have not had since these symptoms started 3 years ago.


I'm in the "mom martyr" club too. We work through flu, cold, headache and are just generally tough. Maybe time to give that a rest when you are legitimately feeling bad. Good luck!

My other suggestion is to go to this gluten-free crockpot website. Free recipes. Great for families and could end up reducing your food budget even. http://crockpot365.blogspot.com/ The author's daughter has celiac. It doesn't use many specialty items and your whole family would have a good, gluten-free meal. Her instructions talk about what products are ok or need to be replaced with a gluten-free version.

Regular ingredients that are naturally gluten-free are not too expensive. Potatoes, rice, veggies, meat, chicken, beans. Use the crockpot to make gluten-free meals while you're at work.
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#735950 Help And Advice Deperatley Needed!

Posted by cyberprof on 03 October 2011 - 10:32 AM

Update: Dermatology have incorrectly biopsied my rash (celiac DH) and also told me it is likely to be eczema or psoriasis - despite link to food - they can't answer that.

Gastro app today told me I have to go on low residue diet as it's IBS I am suffering with, not Celiac - it's all in my head. I am to remove fibre from my diet then drink fibogel (go figure). It's impossible to cure abdo pain, nausea and trapped wind as well as curing bowel issues - only one can be helped - I must decide which. He's refused to do endoscopy and will review in 4 months to change fibogel for something else if it hasn't helped.

I left in tears, very down and sad tonight. No-one seems bothered with the "Hives" I get on my legs which as far as i've researched looks likely to be caused by an allergy to food. Dr's are happy to say mouth and throat ulcers are bechets related even though I have no other symptoms and no-one seems bothered about the tingling/numbness in my hands, the migraines/headaches, fatigue, irritability, rash, weight gain (despite regular exercise and eating healthily).

Oh well...

:(


So, now that you've exhausted all the testing, it's time to give the gluten-free diet a chance, right?
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