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cyberprof last won the day on February 13 2012

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  1. I guess not a huge surprise, my biopsy results showed "remarkable" damage/changes consitent with celiac. My blood panel was hugely positive so she expected to see these results, but somehow "remarkable" damage makes it feel more real to me :(

    I am quite shocked that I do not have significant vitamin deficiencies, even my iron is normal. I am grateful, just such a fluke based on my results. I have not had my D levels checked, I do take 5000 IU daily already before I knew I had celiac. Here is what I currently take, can someone tell me if I'm ok with these to keep my vitamin levels high?

    Nature Made liquid softgel for women, multi with iron, folate, adequate B vitamns.

    D3 - 5000 IU daily

    Magnesium complex- 500 mg citrate/oxide combo

    Renew Life probiotic adult formula 15 billion, I have been taking 2 a day.

    Follow up in 3 months for repeat blood panel.

    Mom-of-two, the "remarkable" damage is just "medical-speak" for something that is visible during the endoscopy. It doesn't necessarily mean that it is a huge problem but you could ask the doc for your "Marsh classification score." Celiac is classified from Marsh 1 to Marsh 4, depending on the level of damage. See wikipedia for definitions: http://en.wikipedia.org/wiki/Coeliac_disease

  2. Gina, welcome to the gluten-free forum! It's a good place for celiac info.

    I have noticed that my eyes are good then bad then good again. I hadn't noticed any connection to gluten though but maybe I'll start a log.

    I am very curious if there's a gluten/fuch's connection. My dad is the supposed link, as I think he probably has celiac or at least the gene but hasn't been tested.

    From what i understand about Fuchs, it may be caused partially by inflamation, and as celiacs know, gluten causes an inflamatory reaction in people who are gluten-sensitive and/or celiac. Just another reason I wish I'd been diagnosed in my teens insted of my forties. (Vent! sorry)

  3. Chocolate Mug cakes are all the rage now. They're good for a simple treat after the kids have gone to bed. I've tweaked this recipie and it's good gluten free.

    Chocolate Mug Cake


    -1 T gluten-free flour plus 1 T ground almonds

    -1 T cocoa powder (unsweetened)

    -1/8 t baking soda

    -pinch of sea salt

    -1 egg white or 2 T egg substitute

    -2 T milk or almond milk or rice milk

    -About 2 t sugar (or 1 packet Splenda)

    -1 tsp vanilla

    - 1 T oil, yogurt or applesauce

    -1 or 2 T chocolate chips

    - Cinnamon, or if you're feeling bold, a shake of cayenne pepper

    Grease a coffee mug (nonstick spray is fine if you have it). Add the dry ingredients. Mix in the wet ingredients and the sweetener. Mix well to get bubbles out. Add the chocolate chips last, placing most of them in the center of the mug.

    Microwave for about 2.5 minutes. Be forewarned that the cake will rise up over the rim of your cup, and you will panic, but it will not get all over your microwave. It sinks back down when it's done cooking.

    I use almond flour because I like the taste with chocolate but you could use 2Tblsp of flour instead of almond flour/gluten-free flour mix.


  4. I don't know about you, but I would lose weight on that diet. Heck, I need to lose weight so I should follow it.

    The key to gaining weight is calorie-dense foods and eating mini-meals often.

    I would suggest some good fats and some extra protein. Good fats include olive oil, avocados, nuts like almonds, pecans and walnuts.

    How about:


    - gluten-free cereal with rice milk / Orange Juice

    Add one or two hard-boiled eggs. Or some Canadian bacon. Roll up canadian bacon and salsa in corn tortilla. Can you have dairy? If so, some yogurt topped with berries, gluten-free granola or nutty flax cereal and almonds. Or cottage cheese with pears.


    -Chicken salad, baked potato / V8 Juice

    Add bacon pieces and sour cream (or dairy-free sour cream) on top of potato. Tuna fish or shrimp or crab salad in avocado halves. Quinoa mixed with the chicken salad. Or serve on top of polenta.


    -Chicken, brown rice, vegetables, sometimes baked potato

    Snacks are usually fruit, gluten-free chips, gluten-free waffles

    Add nuts to the fruit, put peanut butter on apples. Have tortilla chips, guacamole and salsa for a snack. Or hummus and veggies like carrot sticks, cucumber sticks or celery or tortilla chips. On the gluten-free waffle, top with peanut butter and sliced banana or PB&J and have as a snack. Make trail mix with almonds or other nuts, chocolate chips (there are dairy-free chips), and craisins or raisins or dried cherries. Have popcorn with nuts and raisins. Roll turkey lunchmeat around string cheese.

    Make smoothies: Throw in some frozen strawberries and frozen mango chunks (Slightly thawed) or banana and strawberries or blueberries, plus some yogurt or sorbet (sorbet is dairy-free). Add in some flax oil. Add in whey protein powder or egg white protein power. Blend and drink or take in a mug (with lid and straw) on the way to school or work.

    For on the go snacks, have a LARA bard or a Kind bar. If you can have dairy, have an Ensure or other pre-packaged smoothie.

    Good luck!

  5. 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.org/wiki/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.

  6. People in the US also have been diagnosed without genes. In a study at UC Irvine they have 800 biopsy confirmed Celiacs and 5% do not have the genes. I emailed back and forth with the sub-investigator on the study and she confirmed this.

    Yes, our own Ravenwoodglass is one of those.

    It's a moot point for the OP, Lizzy, because she, her kids' dad and her kids all have at least one celiac gene, predisposing them to celiac (but not making celiac a certainty).

  7. Over a year ago I was diganosed with Celiacs disease followed by my middle child being diganosed not to long after this. I have two other children, one is symptmatic and the other is gluten-free because she was a baby when I was diganosed and she has just always eaten what her sister & I eat. I recently discovered that because I am DQ2 DQ8 thta i will pass on one of these genes to all of my children. Futhermore I discover because my middle child who is DQ2 Homomzygous (she has two DQ2 genes) that it is more than possible she recieved one from myself and one from her father, Which puts all our children at greater risk.

    Does anyone have anymore information on this?

    OK, as you noted, each person has two chances to have a celiac gene.

    This is what we know:

    You - DQ2/DQ8

    Middle Daughter - DQ2/DQ2

  8. Perhaps because any idiot with a Blogger account can claim expertise? ;)

    I found another case study for you.


    Well, in my case I told my doctor that I thought I needed to be tested for Hashimoto's based on symptoms and she said "Don't belive everything you read on the internet. ... You just need to lose weight." And when I said that PubMed and my brother the doctor were big sources of my information, she ignored me.

    Some doctors don't like patients to have control or input into their diagnoses or to have patients as participants in their own healthcare.

  9. I had the symptoms of celiac (stomack pain, vomiting, diarrhea, etc) around puberty & didn't know what on earth it was. They all went away after a while, but then I started having complex-partial seizures around the age of 19. I was diagnosed w/ epilespy when I was 21. After my second pregnancy all the celiac symptoms returned. Finally, after a yr & a half of pain I was diagnosed w/ celiac disease. My question is whether or not the celiac is the cause of my epilepsy. My neurologist said he's never heard of celiac & epilepsy being related, but I've read differently on the web. Has anyone had any similiar experiances or know any information about a real relationship between these two diseases?

    Tgrissom, the best way to find information that medical professionals will accept is to use PubMed or other peer-reviewed medical journals: Most doctors work on true scientific findnings and will be more or less unhappy when presented with non-tested theories. (IMHO, they are prejudiced against patients who don't rely on medical research or who say "I read it on the internet".)

    Here are articles to get you started:


    Good luck!


  10. 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.

  11. I, too, was amazed to see this posted yesterday and also went to the site and re-read the FAQ. I've been taking this for a while without checking...just assumed that if regular coated ADvil was ok, then the gels would be too. I've had some possible instances of feeling unwell but had not found the culprit. NO more liqui-gels for me.

    Funny, though, last week I went to Costco and picked up a big bottle of regular Advil by mistake. My kids say that the liqui-gels work faster, so I was dissapointed to have purchased the wrong kind. At least now I have the right kind and I can have my daughter finish the liqui-gels.

    I agree that it should be on the label. I read the label before buying (but didn't call or check the website) but there is nothing suspicious on the label.

    Thanks for posting this Zee.

  12. I second the use of dining cards. I got free ones from this site http://www.celiactravel.com/cards/ (but I also donated a few bucks). I cut the cards up and put both the English side and the foreign side together and put them both in plastic (like a luggage tag). Then I keep them in my purse and give them to the server to take to the kitchen. If I get it back, I reuse it otherwise I just make more.

  13. Happy birthday and congratulations on five years fo progress being gluten-free. Thanks for letting me that I can look forward to some of my issues passing. Struggling right now with planter's faciitis myself.

    It's funny about the plantar faciitis...I had it so bad that I couldn't walk at times in the 3 years before diagnosis. Even wore a night-splint for 10 months straight. Special shoes, inserts, ice - no dice. Nothing helped. But then in all the excitement about celiac, it took me about a month to realize that I wasn't in pain anymore. It could be a coincidence...but it never came back!

  14. Happy birthday and thanks for sharing your story. Can you share something else? I'd love a carrot cake recipe!! :)


    The carrot cake and brownies are from the Gluten Free Goddess Cake - http://glutenfreegoddess.blogspot.com/2006/10/coconut-carrot-cake.html

    Brownies - http://glutenfreegoddess.blogspot.com/2006/01/dark-chocolate-brownies.html She's updated her recipe so it's dairy-free too although the original with butter is to-die-for if you can have butter. I makethe carrot cake dairy free and use earth balance for the frosting and no-one has ever complained...even my non-gluten-free and non-df daughter!

  15. Happy Birthday to me! And Happy Re-Birthday to me too! Thursday is my birthday yes, Im 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, Ive adapted to eating gluten-free and manage most situations pretty well. Business meetings and travel are still a challenge, but not unmanageable. Im 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

  16. It's nice that your sister is so thoughtful and good that her hubby is seeing benefits from gluten-free too.

    Most of the time, my house is gluten-free (kids at college) but I do occasionally have gluten in the house when DD comes home from school. I don't allow gluten on my cutting boards, teflon skillets, in the tupperware etc and I have separate gluten implements and gluten-free implements (e.g. all my gluten-appropriate implements like pancake flippers, spatulas etc are green colored so that they are noticably different). But I wash them all together, usually in the dishwasher. I don't get any gluten pieces or chunks in the dishwasher (I pre-wash) and am very careful about throwing leftovers down the sink. When I wash up gluten plates (only 8-10 times a year) I don't use my scrubber or sponge, just a disposable towel or paper towel.

    I think that the general consensus here is that gluten doesn't stick to glass or stainless steel or china. Those things are fine to be used with gluten as long as they are properly washed.

    I've never heard of a dish soap or dishwasher detergent that had gluten in it...has anyone?

    For handsoap, there are some that had gluten in them but most of the SoftSoap varieties are gluten-free.

    So, I think as long as your sister has gluten-free cutting boards, colanders etc. that is as good as you need to be.

    I'm pretty sensitive and haven't gotten sick at home in years.

  17. i actually haven't eaten zucchini or other squashes in a long time. I didn't like them at all as a kid...but I'm going to have try some stuff again and see what I think of them. :)

    And, I'm still really interested in finding a good bread. Either one that I have to bake or something already made.

    Thanks!!! :)

    I like Rudi's gluten-free bread, which is sometimes kept in the freezer section to keep it fresher. Be careful, because they also make gluten bread. THere's also Udi's (yeah, Rudi's and Udi's...confusing) which some people like better.

    Making bread may be cheaper if you can find a mix you like. Pamela's has a good mix and so does gluten-free Pantry.

  18. i can't eat a lot of meat. most meats are very hard to digest. i can have a little bit of red meat...mainly ground beef....and chicken/turkey. No steak, pork, etc. I am in extreme pain when I eat some meats...

    And, veggies have to be cooked until they are really soft. Otherwise I have trouble digesting those as well....

    Can you eat zuchini and other squashes? I have some good recepies for squash puree which would be a good alternative to mashed potatoes and cheap too.

    I have some other ideas. I'll send you a PM (Personal Message).

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