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      • Frequently Asked Questions About Celiac Disease   09/30/2015

        This FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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    About ChrissyInNH

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    1. ChrissyInNH added a post in a topic Sugar Intolerance   

      I just found out that I am intolerant to sugar cane (as well as many other things), so I feel your pain! I did have some suspicions, so I started using agave nectar for my tea and other things a couple of months ago. I am amazed at how many things have sugar in them now that I have to totally avoid it.

      Does anyone know... if I'm intolerant to sugar cane, would I also have a problem with, say, beet sugar? Beets came up non-reactive for me. I am looking for a natural, granulated sweetener I can use for baking. (I react badly to Splenda, NutraSweet, etc.) Agave just isn't cutting it. It makes things heavy and rubbery. I found some stuff called "Just Like Sugar" that I might try. I also have some granulated fructose, and I could even try dextrose I suppose, since it's from corn.

      Or do I need to avoid ALL sugars?
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    2. ChrissyInNH added a post in a topic Could My 2yo Have Celiac?   

      I just wanted to poke in here and wish you luck with Taylor. My son (Mack, age 2)and I have celiac disease but we are self-diagnosed. I couldn't get our doctors to do the proper tests, so I took action and we went gluten-free 6 months ago. The difference has been amazing. Mack was didn't have any vomiting as a baby, but he started out at 95 percentile and eventually ended up below the 50th. He was very thin with a big hard belly making his ribs pop out. I have a photo of it. Now after 6 mos gluten-free he is doing great! His belly looks normal for a 2 year-old. He used to have chronic diarrhea and would make a BM at least 4x a day. He was also having temper tantrums and had a very short fuse.

      He is also casein free, because he seems to have a problem with dairy and also I should mention autism runs in my family so we are doing the Gluten-free Casein-free diet with much success! He is not autistic but I know he has similar food sensitivities.

      Since going gluten-free, I met a wonderful naturopath doctor who has been having me take some tests. It turns out I have Leaky Gut Syndrome. I'm pretty sure that ( as well as the other autoimmune issues I have) stemmed from celiac disease.

      Anyway, my son is now going up the charts again in height and weight and he not only looks great, he is doing much better in speech and cognitive (he is in early intervention). We also found out he had fluid in his ears and tubes have made a huge difference in his communication skills.

      If you cannot get a dx from a doctor, then you can always take matters into your own hands and try going gluten-free (after your tests of course) and see if there is an improvement. In our case there was no question! The one great thing about this disease is that the cure is not a drug, it's just a diet. :-)
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    3. ChrissyInNH added a post in a topic New Here And Very Frustrated!   

      Hi Meenucat (neighbor!),

      They are actually little blood spots and can mean that you have a low platelet count. Sometimes this can mean you have ITP which is Immune (or idiopathic) Thrombocytopenic Purpura or other autoimmune issues like lupus - but it can also be normal I'm told (but I'm not sure I believe that).

      The spots are flat and under the skin. When you press something clear onto the skin (like a glass slide) the spots don't lighten. You can have one or two, or you can have hundreds. Mine show up on my shins and I've had them on my stomach area.

      I hope that helps! Try looking up Immune Thrombocytopenic Purpura on the net.

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    4. ChrissyInNH added a post in a topic Eating Gluten Won't Cause A Reaction...   

      Thanks for your responses everyone. I really appreciate it! I'm wondering if my insurance might cover Enterolab tests. I actually have something in my insurance that covers "alternative care" such as massage, acupuncture, etc., so if my regular insurance won't cover it, the alternative care part might.

      Thanks again!
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    5. ChrissyInNH added a post in a topic Very Ill   

      I notice that a lot of products that say wheat-free are made from barley flour, which is a no-no.

      Hope you have a speedy recovery!
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    6. ChrissyInNH added a topic in Celiac Disease - Pre-Diagnosis, Testing & Symptoms   

      Eating Gluten Won't Cause A Reaction...
      I went to see a gastro today for the first time, hoping for some insight and possibly a diagnosis. According to him, ingesting gluten does not invoke a reaction (such as headache, diarrhea, stomach cramps, moodiness, etc.) in someone with celiac disease. He said the gluten is not the irritant that causes an immediate reaction (within an hour or a couple of days). He said that it is the damage to the intestine that causes the malabsorption and ingesting gluten won't cause a problem for weeks. He compared it to lactose intolerance and said that the lactose is just sitting there irritating and causing gas and bloating, but gluten does not affect us that way - apparently.

      Uh, does this sound right to you guys? I'm new at this and from what you all have said, this couldn't be farther from the truth! Did I just waste another $20 co-pay? (not to mention driving an hour down and back to Boston, fighting ttraffic.)

      I am really frustrated. I think I'm just going to keep myself and my son (age 2) on the gluten-free diet and forget about getting an official dx. I feel better than I have in years and my son is doing great! Maybe in 10 years or so the medical community will wake up and we can get a dx. I don't mean to doctor bash. I'm just feeling upset right now, so I hope you'll excuse me.

      • 8 replies
    7. ChrissyInNH added a post in a topic Deducting Food From Taxes   

      Never mind the above. My post got pinned into this conversation and I had no idea! Now I have the answers. Thanks!

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    8. ChrissyInNH added a post in a topic Deducting Food From Taxes   


      I am a self-dignosed celiac, and so is my 2 year-old son. I am having trouble getting diagnosed officially. I had the blood test and it came up just a hair below positive. My doc then dismissed it and said there was no need to do a biopsy. I believe I do suffer from celiac disease and the reason my test was negative was because I am on Plaquenil for (possible) lupus and autoimmune issues, and it reduces my antibody counts. So, I've fallen through the cracks yet again.

      Since that happened I decided to take matters into my own hands and put my son and I on a gluten-free diet. The changes in our health are nothing short of amazing! I know I am onto something here.

      My question is - if I get tested by Enterolab and get a positive test, is that enough to warrant deducting food from my taxes? What are the rules on this? What about seeing a naturopath? There is apparently a great doc that specializes in celiac disease just an hour away from me in Nashua, NH.

      The way I see it - nobody would willingly subject themselves to this diet if they didn't have to. I really feel it is imperative that my son and I remain gluten-free for the rest of our lives. So, why is it so hard to get a diagnosis? My son and I have most of the symptoms, autism runs in my family, I have autoimmune diseases, my grandfather died of colon cancer and my aunt currently has it.

      Thanks so much for your input!
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    9. ChrissyInNH added a post in a topic Celiac And Other Auto-immune Diseases   

      Hi everyone!

      I have similar issues. I am currently on Plaquenil for possible lupus and Levoxyl for Hashimoto's Thyroiditis. I also have endometriosis, hypoglycemia, PCOS, and other autoimmune problems. I tend to be anemic and have low platelets. I have ANA antibodies, anti-thyroid antibodies as well as Sjogren's antibodies. Also, I went through 6 years of infertility & miscarriages before finally conceiving and carrying my son to term.

      My almost-2-year-old son and I have been gluten-free for 1 1/2 months now and I am seeing dramatic improvements in our health! The weirdest thing is that my body is reshaping itself - like it's firming up. I supposed I could be building muscle? Also, I have reduced my Plaquenil to 1/2 of the dose and I'm feeling better than I have in years. My hair stopped falling out for a while, but suddenly it's back at it again. (Probably due to my goof up mentioned below.)

      By the way, we are self-diagnosed. My antibody test came back just a hair under positive - but I belive this is because I am on Plaquenil which suppresses antibodies in general. My GP didn't see any point in going further, so I decided to take matters into my own hands. I have seen enough evidence that being gluten-free helps to make a lifetime dietary change. Plus, I goofed one day and ate gluten and had horrible stomach cramps and had symptoms for 2 weeks afterward. Another clue is that autism runs in my family, and there is certainly a link with celiac sprue and developmental disorders.

      I personally don't think the diet is that difficult - but I'm not a huge bread and pasta person. I like corn and corn/quinoa pasta. I also like the rice/almond bread I've been buying. We've been eating more organic things and more veggies and meat. I'm weeding out non-gluten-free items such as make up and shampoo. This diet is totally worth it to feel good! The main thing I miss is pizza from the local pizzeria. *sniff*

      My son is doing very well. He has gained some wieght and has color in his cheeks. His diarrhea is gone - unless he gets gluten at daycare by mistake. His tantrums have disappeared! It's enough proof for me! (Just don't ask me to give up my dairy! lol)

      Good luck everyone! I think once you fix the celiac issue, the others should improve somewhat. That's what I am experiencing.
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    10. ChrissyInNH added a post in a topic Personal Care Products, Cosmetics   

      Thanks for the info! That was very helpful.
      Christine in NH
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    11. ChrissyInNH added a post in a topic Is It Just Me?   

      I totally agree with you all about it being everywhere! My husband and I are not related by blood (obviously - that would be pretty sick!) and both of us plus our 22 month-old son went gluten free last month and we are ALL doing much better. What are the chances of both my husband and I having celiac? Not good according to the stats - but we both have obvious improvement.

      I/We are self-diagnosed celiacs. I had the blood test done and it was high-normal, but I am on medication for lupus that calms down my antibodies, and I think I would have had positive results if I wasn't on this medication. (Why didn't my doc know this?)

      Anyway, I believe my whole family has celiac. A bit hint is that my niece has autism and is hyper, my sister (her mom) obviously has asperger's. I believe my dad has asperger's too, and I have ADD. As you know there is a big gluten-sensitivity issue here. So far I am the only one to try the gluten-free diet. The rest of my family doesn't want to even try it. You would think my sister would try it on her daughter. If it were my child I would do it right away!

      Hopefully the medical professional will get on the ball soon and realize that this is an epidemic. I bet eventually, gluten-free foods will be as popular as low-carb is now.

      Christine in NH
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    12. ChrissyInNH added a post in a topic I Had An Accident   

      Mario & Mariann - Happy Birthday to both of you! Mine was Feb. 17th (I turned 34) and that is the day I went gluten-free. So far so good!

      Mario - I hope you feel better soon!
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    13. ChrissyInNH added a post in a topic 9 Days Gf - Swollen Hands, Feet & Ankles   

      Okay, I went to the new WalMart down the road and took my BP at the machine. It was totally fine. So that's good! At least I don't have to worry about that anymore. It must just be some water weight. Hopefully it'll go away soon.

      Hope you are all feeling well today!
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    14. ChrissyInNH added a post in a topic 9 Days Gf - Swollen Hands, Feet & Ankles   

      Hi again,

      I am now almost 4 weeks gluten-free and I am still having this weird swelling symptom. It's not just in my limbs - but in my face and elsewhere. I didn't think too much of it, but this morning I realized that this is the same feeling I had when I was at the end of my pregnancy and had HELLP syndrome (severe pre-eclampsia). I'm wondering if my blood pressure is high? I usually have very low blood pressure and the only time it was high was when I pregnant as stated above. I had the same puffy feeling.

      I have noticed I have more color in my skin. I think I'll scoot down to the grocery store blood pressure machine just to see what it says. If this keeps up I will certainly call my doc - but I am self-diagnosed and she already thinks I'm a wacko. I KNOW I have this disease though. I have 80% of the symptoms. My blood tests were normal but one of them was just under by 1.2 points. I am on hydroxychloroquine (Plaquenil) for probably lupus and other antibody issues. Is it possible that the medication I am on - which is meant to help bring antibody counts down - could have reduced my anti gliadin antibodies as well?

      Anyway, thanks for all of your insights. I think it would be very weird if I went gluten-free and all of a sudden my blood pressure was high. The only thing I can think of is that my body was so undernourished it's having a hard time readjusting to having nutrients? My poor little blood vessels probably don't know what hit them!

      Also, I should note that after losing about 60% of my hair, it is all growing back!! I am so excited!! Also, my nails are growing out smoother with less ridges. My skin is softer than ever. I had no PMS last month. I have more strength and energy. The list goes on! My son (22 months) is gluten-free too and he has a whole new personality and no diarrhea! I am really excited and I think I am convinced enough now that I will go buy a bread machine.
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    15. ChrissyInNH added a topic in Celiac Disease - Post Diagnosis, Recovery/Treatment(s)   

      9 Days Gf - Swollen Hands, Feet & Ankles
      Hi all,

      I have been gluten-free for 9 days and I notice that my hands, feet and ankles are rather swollen - especially in the morning when I get out of bed. Is this normal at this stage? Also, it's after 9 pm and my ankles are still a bit swollen. I just thought it was weird.

      One more thing... (hope you don't mind)... My husband and I had pizza on a pre-made rice crust for dinner and now my throat feels tight and scratchy. Has anyone experienced this? I don't know if it was the food or if I'm coming down with something.

      Thanks so much! I hope you all are feeling well tonight!
      • 11 replies

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