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Latest Celiac Disease News & Research:
Everything posted by ravenwoodglass
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ARCHIVED Blood Test Positive, Dna Postive, Biopsy Neg. Celiac?
ravenwoodglass replied to greenhillsfive's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Wow a neuro that is smart enough to consider celiac! Wish mine had. Welcome to the board and be strict with the diet as the neuro effects can make us more sensitive to trace amounts. Neuro issues can take a bit longer than gut issues to resolve so hang in three. I hope your feeling better soon. -
ARCHIVED Really Disappointed....
ravenwoodglass replied to WinterSong's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Glad you know that there is a chance of a false negative and you will be staying gluten free no matter what the biopsy results are. The anxiety you are feeling is pretty normal. You just got diagnosed with something that is life changing plus you have only been gluten free a week and may be experiencing withdrawl. If that deductable is going to be a hardship... -
ARCHIVED Really Disappointed....
ravenwoodglass replied to WinterSong's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
I would call the insurance company to find out why they are not covering your tests. If you had very positive blood work and your doctor feels the need to do them they should be covered and by the time you add in the anesthesiologist, the doctors fees, the fees for the room and lab charges for the biopsy you are not talking pocket change. You may also want... -
Gluten In Cigarettes
ravenwoodglass replied to SarahSway's topic in Gluten-Free Foods, Products, Shopping & Medications
Yea I think there is a lot more than just the nicotine in many brands that is addictive. They burn slower because they don't have all the additives. I never smoked a whole one of the prerolled either and was pleasently surprised how much I was able to cut down effortlessly with the American Spirit. A nice effect when you live in a state with the highest taxes... -
ARCHIVED Nephrotic Syndrome
ravenwoodglass replied to ValeriaZ's topic in Related Issues & Disorders
Welcome to the board. It is wonderful that your family has had such good results on the diet. Thanks for posting. -
ARCHIVED Question About Implication Of Genetic Testing
ravenwoodglass replied to Flor's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Yea I didn't consider testing either until my blood and biopsy diagnosed DD had hers done and was told her diagnosis was false. Since not all celiacs are automatically tested for genes on diagnosis I think there are a lot more than just the two most common that are associated with celiac. Doctors just don't realize it yet. -
Gluten In Cigarettes
ravenwoodglass replied to SarahSway's topic in Gluten-Free Foods, Products, Shopping & Medications
I smoke that brand also with no issues and no problems with the adhesives. I am very senstive to gluten. I like that the cigs are just tobacco with no other ingredients or additives thrown in. I also find I smoke much less of these. Some of the other brands I have smoked left me wanting another as soon as I put one out. With these when I smoked the prerolled... -
ARCHIVED Celiac ?
ravenwoodglass replied to sminty's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Serologic Tests EMA (Immunoglobulin A anti-endomysium antibodies) AGA (IgA anti-gliadin antibodies) Some people do not produce IgA antibodies. DGP (Deamidated gliadin peptide antibody) tTGA (IgA anti-tissue transglutaminase) along with a total IGA -
ARCHIVED Need Help With Blood Test Results
ravenwoodglass replied to milz45's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
As the previous poster stated celiac testing was of no value with the length of time you have been gluten free but you do have one of the main genes associated with celiac. You may want to eliminate everything you had a reaction to with the allergy testing and do make sure you are taking all the needed steps to avoid cross contamination. You could also... -
ARCHIVED Negative Tests
ravenwoodglass replied to missanomaly's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Welcome and do read as much here as you can. Your doctor can not tell just by looking whether you will be positive on biopsy or not. That's why they need to do the biopsy. It is best at first to go with whole unprocessed food as much as possible. You will need a new gluten-free dedicated toaster, replace all condiments, nut butter, etc that you had used... -
If you don't have the skin lesions then iodized salt is not going to be an issue for you. Iodine is only an issue for those with DH. The label on your script bottle or the monograph that the pharmacy gives you should have the maker on it. It is best to call the maker if you can. If you put thier name and the words contact info in a search engine you can...
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ARCHIVED Dna Test Negative
ravenwoodglass replied to annegirl's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
Have you eliminated soy? I had a lot of issues for the first couple of years because I didn't realize I needed to eliminate that also and a lot of the gluten free stuff I was buying had soy. I am not a big fan of using gene testing to rule celiac in or out. Until they start routinely gene testing everyone who is diagnosed IMHO it can be more of a problem... -
ARCHIVED Biopsy Negative...crying
ravenwoodglass replied to Stellar003's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
IBS isn't really a diagnosis it is a symptom. Since testing has so many false negatives it is a good idea for anyone with IBS symptoms to give the diet a good strict try after all celiac testing is done. Many of us that suffered undiagnosed for years were told constantly that we had IBS when what we really had was celiac or gluten intolerance. Sometimes the... -
ARCHIVED Should My Family Get Tested?
ravenwoodglass replied to chili's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
Glad to hear the diet is working so well for you and that you are overcoming your other issues. It is hard and you are to be commended for dealing with not just one but two difficult life changes. Don't lose heart with your family. It took six months but eventually my family realized that the diet was a life changer and finally all agreed to be tested. All... -
ARCHIVED Deficiencies And Recovery Time
ravenwoodglass replied to krishna's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
Go ahead and take it. If you have excess in your system you will simply excrete it. There is no toxic level for B12 as it is water soluable. Your doctor can retest in a few months to see if you can step down to a lower level. -
ARCHIVED Celiac ?
ravenwoodglass replied to sminty's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
If you are in the US you have a legal right to hard copies of those tests you shouldn't have to beg but you would need to sign a release. Also they did not do a full panel on you if those are the only results. -
ARCHIVED Is There A List Of Foods That Test Ultra Low In Gluten?
ravenwoodglass replied to dws's topic in Coping with Celiac Disease
I find stuff from places that only do gluten free food to be the safest for me. I do Grainless Baker, Udi and Kinnickkinnick for baked goods without any problems. I also find a rice cooker to be a big help. I rinse some rice real well while some onion, oil and garlic brown in the bottom section and then add either left over chicken or some frozen shrimp and... -
ARCHIVED Not Feeling Well Today...
ravenwoodglass replied to healinginprogress's topic in Coping with Celiac Disease
Sorry your feeling so lousy. Can you wear food service gloves at work to help prevent any possible CC? If the Vega shake is making you feel queasy you might want to do a smoothie of some kind for a while instead. I hope you can get some much deserved rest this weekend. -
ARCHIVED Dna Test Negative
ravenwoodglass replied to annegirl's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
Welcome to the 'oddball gene' club, I am a member of it myself. I do hope they are able to figure out what else is going on with you and that you are feeling better soon. -
ARCHIVED Pet Goldfish
ravenwoodglass replied to adk's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
I had goldfish for quite a while and I just washed my hands after feeding them and wore rubber gloves to change the water. -
ARCHIVED B12 Too High
ravenwoodglass replied to dube's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
Not according to the NIH. However if your levels are very high you are wasting your money. Health Risks from Excessive Vitamin B12 The IOM did not establish a UL for vitamin B12 because of its low potential for toxicity. In Dietary Reference Intakes: Thiamin, Riboflavin, Niacin, Vitamin B6, Folate, Vitamin B12, Pantothenic Acid, Biotin, and Choline... -
ARCHIVED Depression And Celiac
ravenwoodglass replied to Lucydesi's topic in Related Issues & Disorders
An overwhelming suicial level depression hits me as my first indication that I have been glutened. Thankfully I know what it is and now that I am gluten free it lifts within 24 hours, then everything else sets in for a few weeks. Antidepressants never helped me at all. In fact they made me worse prediagnosis. Recent research is advising doctors to test for... -
ARCHIVED Question About Implication Of Genetic Testing
ravenwoodglass replied to Flor's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
I have to disagree with this. Not all celiacs who are diagnosed have their genes tested and gene testing is in it's infancy. There may be many more genes associated with celiac that we don't know of yet and it can even make a difference depending on where in the world you live as to what is considered a celiac associated gene. The gene testing in my family... -
ARCHIVED Do I Need To Worry About Tocopherols In My Lipstick?
ravenwoodglass replied to JoLynneS's topic in Gluten-Free Foods, Products, Shopping & Medications
Call the company and ask what the Vitamin E is derived from. If you tell us the brand then someone else may have checked to see if it is safe already. -
ARCHIVED Question About Implication Of Genetic Testing
ravenwoodglass replied to Flor's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Not everyone who has the genes will develop the celiac. If he has no symptoms in growth, behavior or any physical issues then just have him blood tested. If he has any symptoms then take him gluten free after all testing is finished no matter what the results as false negatives in children are even more common than with adults. Celiac can develop at any time...