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researchmomma

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researchmomma last won the day on February 14 2012

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  1. Did you know that KRAFT mac and cheese packet is gluten free?

    Here's what works best for us.

    We take out the packet, throw out the gluten pasta. I make penne from Schaar (or brown rice spirals). While they drain I whisk together the milk, cheese packet and butter. This way it is all smooth and doesn't stick to the gluten-free pasta.

    Then toss back in the pasta.

    Guess what? My gluten-free son now likes this better than gluten pasta Mac and Cheese.

    Give it a whirl.

    PS: if you are super sensitive their could be gluten flakes on the outside of the packet. I dump out the pasta and then I take a moist paper towel and wipe down the outside of the packet. My daughter is pretty sensitive and hasn't been glutened yet.


  2. The things people say are really amazing. Like Irish, we have had more than a few people say "oh, you are on that fad diet".

    Then there are the friends who go out of their way to accommodate and have you over for a really nice gluten free dinner (all the while asking questions to make sure they don't accidentally gluten my daughter).

    I have a neighbor who has two or three autoimmune diseases and when she brought her ailments again, I told her about gluten free and what it has done for us. She said she couldn't even think about how much work it is to be gluten-free and how many things she would miss. She also didn't think her family would support it. I guess they would rather hear about all her ailments and grief. :o:(


  3. Hilarious and yet, frustratingly annoying as well :lol:

    Thanks for sharing, honey!

    Yes, I have heard similar queries about bread, only it was "WHOLE WHEAT is wrong, but other bread is okay, right?"

    another was:

    someone, smiling at me, all excited, holding up an ice cream sandwich and asking:

    "This is okay, right!? It's just ice cream!!"

    :huh:

    When I said (as a celiac), I can no longer can receive communion, a real Mensa candidate I know said in a hushed tone, "oh, is that because you were divorced?"

    :lol:

    Oh well, we were once dumba$ses about this gluten stuff, too.

    That is funny Irish. Hey, our Priest made a point to get gluten-free host because so many of his parish are gluten free!


  4. Welcome to the Board. Mostly, welcome to gaining your health back.

    I also lurked for about a month. When I posted my daughter's symptoms and how many different drugs the "ologists" wanted to put her on, the posters above and a few more jumped in and rescued my sanity (more than once I might add).

    I am also grateful. Sometimes I read a post by someone who is as lost and scared as I was and it brings tears to my eyes.

    My doctors didn't diagnose my daughter, the peeps on this board did.

    I am glad you shared your thoughts!


  5. Well I'm going to throw a wrench in the machine. :o

    If gluten is a trigger for Eosinophils, it most certainly does cause damage (auto-immune damage).

    In the matter of Eosinophilic Esophagitus, eosinophils cause grooving and furrows, Schataki rings, food impaction, and in the case of my daughter vommiting blood.

    Time will tell the damage gluten does to individual bodies. Never underestimate what damage is happening to individuals from gluten and what current "label" they are given by the medical community. Any one who tries the diet and feels better, we are here to support gluten free.

    This is no wrench, just another example in my opinion. I know someone with this and she is being checked for Celiac. Is there a direct cause and effect with gluten and EE? Sorry for my ignorance.


  6. I am looking for recipe for ketchup,salad dressing and BBq sauce's . They must be dairy free,gluten free,sugar free including splenda(can use stevia),lemon free,soy free and vinegar free. I know it is a long shot but,thought it was worth a shot.

    I make a gluten-free version of Annie's Naturals Shiitake Sesame. It is really good. Why Annie couldn't use Tamari instead of Soy Sauce is really beyond me!

    I saute two cut up shiitake mushrooms in olive oil (small pieces).

    I toast about 1/4 tsp (maybe 1/2 tsp of sesame seeds)

    Then I mix them with:

    Vegetable Oil

    Apple Cider Vinegar (2oz)

    Tamari soy sauce (2 oz)

    a bit of water

    sesame oil

    1/4 tsp or less of Xanthan gum

    I cook like an Italian mamma so I don't know exact measurements. This explains why I had to buy a scale to bake!


  7. I've been told that my biopsy showed "highly suspicious" of Gluten intolerance, and that my doctor has now ordered a celiac profile blood test to confirm. So my questions are first, i just recieved four units of RBC in a transfusion less than a week ago for four unknown doners. Would the celiac profile test be accurate since I just had the transfusions. also, since they already have the biopsy results will the blood test really show anything? Thanks!

    Just curious, did you get a biopsy? If you did, and that is what they told you, you need a copy of that report asap. If you have a positive biopsy then blood tests aren't even really necessary.

    My guess is that your transfusion probably won't effect it since it was not whole blood but I am not certain. There are others on here who probably know more.

    I think the biopsy results should tell you a lot. Call them up and have them read you the pathology report and then get a copy.


  8. Your GI may diagnose you based on symptoms alone. At least Non-Celiac Gluten Intolerant.

    Here are the reasons I would want a diagnosis. If these don't seem important, I would just stick to the diet and enjoy your new health:

    1) Will you stick to the gluten-free diet if you don't have a Celiac diagnosis? If you eat gluten and you are Celiac, you could open yourself up to autoimmune disorders and/or cancers.

    2) Are there any family members who will not support you without that diagnosis?

    3) Are there family members who may have Celiacs disease? If so, it would be nice to have that diagnosis. Especially if you have children.

    4) If you have children, you could always just get them tested. With kids it is important for schools to have that Celiac diagnosis for teacher support and gluten-free food in the cafeteria (we pack our own lunches so this doesn't effect us but for some it is important). Now in college it will be important but I know my GI and/or pediatrician will write a note for her.

    5) if you have Celiac, then your GI is much more willing to ensure you don't have malabsorption issues.

    6) if you have Celiac, some insurances won't cover you (this just ticks me off). So I guess that is a plus for not getting diagnosed although I think it is really crappy (pun intended). :ph34r:

    As an adult, I could care less if I am Celiac or NCGI or the Queen of Sheba, but my daughter needed to hear from a physician that gluten was making her sick (even after we accidentally glutened her and all her horrible symptoms came on like a Mack truck). She is NCGI by the way.

    I am sure others could add more but that is my two cents.


  9. You are right, I did a poor job making the point of autoimmune vs non-autoimmune - NCGI or celiac disease, or even just Wheat allergy, best medicine is to just stay off of it.

    Hopefully I didn't come off too strong. It is my own issue to be honest. I have a hard time getting people to understand my daughter's very strong reaction to gluten because she isn't Celiac. NCGI doesn't cause autoimmune's as far as they know. My daughter has two of them: eczema and asthma. So who knows! I do understand that Celiac is considered more serious but in some NCGI cases it is pretty darn signficant.

    Have a good night!


  10. Im not super knowledgeable on the subject of NCGI vs celiac disease but I can say one thing, NCGI doesn't cause damage to your body, it is more of a reaction to not being able to digest the wheat or gluten and causes some discomfort, ibs symptoms etc. BUT Celiac causes your body to be flooded by antibodies and that is an auto-immune response - that causes damage to you, brain, organ, skin, lots of different ways and alot of the symptoms have nothing to do with knowing your sick.

    But may I ask, what they tested you for/what the results were? and if you tested positive the next step would be an intestinal biopsy usually ordered by a Gastrointestinal Doctor. (before going gluten free)

    I respectively disagree with you and I think over time medical doctors will find through research that NCGI causes damage or maybe some are not diagnosed correctly.

    My daughter has gluten related seizures, malabsorption (which has led to broken bones, short stature, delay in puberty and zero percentile for weight), anxiety and major GI issues. It is not the same intestinal damage as Celiac (agree) but gluten is a neurotoxin and it causes damage to people even if they aren't Celiac. My daughter has high fecal fat that is only caused in Celiacs according to our pediatric GI (other diseases have been ruled out) but she isn't a Celiac (no genes and negative blood work but ALL the symptoms).

    Anyway, I do think NCGI can cause damage to the body. My daughter is living proof because she is so much better off gluten.

    Hope this makes sense.

    Edited to add that you should google The Gluten File. There are some great articles in there about Celiac and NCGI.


  11. Agree with other posters. Until the medical community understands that there isn't an official "face of Celiac", there will always be misconceptions. Does your nutritionist know that there can be silent Celiacs? In addition, is she disagreeing with your blood work? That is interesting. That is like saying, "well, you aren't as sick as the typical cancer patient so maybe you don't have it". I think maybe she should come to these Boards and learn about Celiac and NCGI. And besides what does it matter to her if you are NCGI or Celiac, the treatment is the same. I am unsure of what her point was? That you could eat gluten on occasion if you aren't Celiac? That is malarky. In addition, she should be more mindful of who she says that too. What if you listened and decided to eat gluten and you developed an autoimmune disease or lymphoma. Not to be dramatic but she is an idiot!

    Welcome and enjoy the road to better health.


  12. hysterectomies are the #1 unnecessary operation in the US. What are ur symptoms concerning your uterus?

    You could go on a trial gluten free for a month. Be vigilent, beware of cross contamination or you will not truly know if going gluten-free helps you. However if you want to get the blood test 1st (celiac panel) and I recommend that you do, do not start ur gluten-free trial until after the blood tests results. Even if its negative a gluten-free diet may help you. If Dr. tries to dissuade you (& many do) stand firm & insist you have a celiac panel. If your blood tests are positive you will have to decide if you want to do an endoscopy. If you do you'll have to continue eating gluten until it is done for a better chance of getting a positive result. Some ppl decide not to scope & just go gluten-free regardless & that's fine too.

    Hope you feel better!

    I have to agree with this. I hate to pry but why are you having this? Is it a total hysto? I have Stage IV endometriosis and my doc did an ablation (which is off label use for endometriosis) and it really helped. The other thing recommended for endometriosis is a gluten free diet. Hmmm, how coincidental!


  13. all great info above!

    from my understanding, and what ive learned on here-> DQ2s and DQ8s are the stereotypical Celiac genes (predisposing u, tho u dont have to get it)... but that ALL the DQ genes also make it possible to trigger Celiac. people overseas have been dx with Celiac withOUT having either the 2 or the 8. and that having 2 of the same DQ genes tends to make u more vulnerable to triggering Celiac

    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.


  14. I had to chime in. My daughter has had fecal impaction since she was 6 years old (that was when we had the first xray). We had negative blood work (low IgA) for Celiac and no genes so they refused biopsy. We eliminated gluten 6 weeks ago. She always has been constipated and after 6 weeks, she doesn't seem constipated! Her stools are soft. This is brand new for us and it is great. Never thought I would be so excited about poop!