This Celiac.com 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 Celiac.com 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 Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
I also have had severe muscle weakness so much so that my nuero was thinking myasthenia gravis(negative blood test). What I did find out is that is caused by carbohydrates which just sounds crazy I know. We still haven't figured out why? It appears to be very unusual.So if I stay no-low carb I can have muscle strength. If I eat carbs my muscles are mush, stair-climbing any activity that is repetitve-sweeping, raking. My parathesia in my legs and feet are much better now too. especially restless legs. Celiacs appear to be deficient in Vitamin D and B-12 of which I am and take large doses. I would always get a copy of your lab request and report and research yourself, there are alot of discrepancies of lab values out there. What was fine with my G.I. was very low noted by Naturopath. Good Luck and be well!
I ALSO COME FROM NORWEIGIAN ANCESTRY! MY MATERNAL GRANDMOTHER WAS 100% AND MATERNAL GRANDFATHER 50%. MY FATHER'S PARENTS IRISH/DUTCH/SWEDISH--NORTHERN EUROPEAN. MY ANTI-GLIADIN WAS THE ONLY POSITIVE BLOOD TEST. MY ENDOSCOPY'S (2) WERE NEGATIVE FOR CELIAC BUT SINCE GLUTEN-FREE DIET IS WORKING G.I. CONFIRMS LATENT CELIAC. DIAGNOSIS HAS ALWAYS BEEN SUBJECT TO QUESTIONING? I DECIDED TO HAVE GENETIC TESTING-POSITIVE FOR BOTH DQ2 & DQ8. SO MY QUESTION IS DOES THIS FINALLY CONFIRM THE CELIAC DIAGNOSIS? I WILL REMAIN gluten-free BUT MY QUESTION IS FOR MY FAMILY MEMBERS BENEFIT--SINCE I HAVE 2 MARKERS DOESN'T THIS MEAN MY CHILDREN WOULD HAVE AT LEAST 1 AND MY SIBLINGS AS WELL! I WILL GO TO THE MEDICAL LIBRARY TOMMORROW I NEED A TUTORIAL ON GENETICS!
Hello all! My latest test results are in and my anti-gliadin is a high 97-this is my only positive "celiac" test. I know I ate the pumpkin custard from a pie(stupid) last month and believe this is what glutened me. But why when I was eating all the gluten I wanted my test results for anti-gliadin were only 79-high. How can my reaction be so high when my exposure so low? I will of course look for hidden gluten-vitamins etc. and be more strict about being gluten free but wonder how long it will take to get my anti-gliadin response to negative?
So many months ago when I first went to see my nuerologist which is also an Integrative health center(naturopath) he stated that all of my past health issues are due to Iodine deficiency. The cervical cancer, thyroid-Graves, Auto-Immune, High Blood Pressure iodine deficiency can all be directly the cause for my illnesses. He then had testing done by Doctors Data 24-hour urine iodine that showed an excretion rate of 46%. I have been taking Iodoral ever since(high potency iodine/potassium iodine supplement @ 8333% daily value). I have noticed no difference, either pro or con. What are your thoughts on this? As always my problems are carbs-stay away feel pretty good. My energy levels are up, I am able to have coffee again which motivates and sustains my energy. I am really starting to believe my problems are not with gluten, casein, mold but the amount of carbs a food has. For example I can have an apple or banana a day, or a couple of wheat crackers(low carb) but if I go over my carb limit I start reacting to environmental molds, food molds. Another example: I had a pancake last night after unsuccesful attempt at a non -gluten low carber(what a disaster) now this morning I am reacting to my morning coffee(mold)- gluten or carbs that's the question? My goal is to be gluten-casein free but lately as I tend to feel better I am "pushing the envelope"!I think that my body is lacking the enzyme to break down carbs-due to radiation/chemo-5mos later-E-coli food poisoning- which resulted in SIBO. I have been on Rifaximin for the SIBO for a week and have one more week left-but notice my carb dilemma still intact- So Sibo or no Sibo? I continue to search for answers, which only brings more questions? I have ordered the acid test strips along with Himalayan Sea Salt at Lame Advertisement.com. Which makes me wonder, how do I know that my supplements are not responsible for my results? When speaking of salt is it really iodine deficiency?
P.S. Do you notice all the carb blockers-diet supplements out there, Alli for one! My daughter stated " All they do is make you run to the toilet because if you eat carbs they go right thru you" and this essentially is my problem! Taking digestive enzymes specifically, Alpha amylase can be the reason for my continued recovery.
How does one know if they are too acidic or alkaline? What testing is done if it is not blood? As always its encouraging to hear your thoughts. You are always asking why? This is just like myself, I do not accept the status quo. There must be some reason, deficiency, problem with the way our digestive system is working/not working that leads to gut dysbiosis/SIBO and the many food intolerances that more people seem to be having each day. How does our environment have such an effect on so many peoples digestive difficulties? Surely the 60's - 80's didn't see as much G.I. issues and their diets were just as bad. It can't all be diet? I believe there is a genetic component, environment and ??? your thoughts. I thought that an acidic environment is needed to keep the beasties at bay? That having low acid gives the beasties an ideal environmnet? Donna
I just wanted to reply to my original post. I am sleeping much better these days. It appears carbs are my enemy. If I am carb free I am able to sleep. If I eat gluten, grain, mold foods, casein, carbs I will not be able to sleep. I experience restless legs also, but not if I remain on this restricted diet. One thing I continue to experience is night sweats. They appear just as I am nodding off, then continue every 3 hours or so therefore I am up usually 2 or 3 times a night but am able to go right back to sleep. I am curious as to what is the cause hormones, low bp or heart-rate ? Any Ideas? I take a vitamin supplement to get my adequate calcium. I have found Many NOW vitamins are yeast,gluten,dairy free. I encourage your Dr's visit make sure to have your B-12 checked! Donna
Do you have SIBO? Have you tried rifaxamin for treatment? I am going to G.I. soon for a script. I continue to feel better off carbs and with my probiotics/enzymes supplements. I'm wondering what specific enzyme am I lacking that keeps me from digesting carbs? Could it be the ill health of my small intestine/leaky gut? Is it the location that keeps me from digesting carbs? I've noticed other SIBO'ers that have trouble digesting fats or proteins! Is it location, location, location that predisposes you to your inability to digest certain foods or your total small intestinal health ? I continue to have weakness and fatigue, parathesia but all have been decreased for the first time since starting this latest regime. I am so excited I am looking forward to going back to work and having my life back! I would truly like to be "cured" even though I hear SIBO is a very cyclical dx. I would enjoy speaking with you as well! So many questions , I think that most of my knowledge (limited) is from others that are lost in this illness.
Thank you all for your replies! I am sleeping much better these days. I do not have the wired / exhaustion problem either. Being gluten-free, dairy-free, mold-free, sugar-free has helped tremendously. My problem with sleep is as soon as I lay down I get night sweat then every 2 hrs or so I awaken same thing. The good news is that I am able to go right back to sleep. My best time block for sleep is 4 a.m.-8 a.m. I believe gluten and dairy/casein were the biggest culprits for me.
My diet has evolved over the last year. In Oct/2008 I was dx Latent Celiac so no gluten. My diarrhea and my incredible appetite was greatly decreased! By Nov I was still having head-eye aches-swelling and noted on this web site that 50% of Celiacs have a problem with casein, so no casein. My aches, specifically eyes ceased. Bbq sauce, sausage, certain fruits, vinegar would cause aches, swelling and I would get high--these were mold foods and believe it or not these were the ones that were the hardest to give up! But eating them will make me dazed, fatigued, weak. As time went on I realized that CARBS are my enemy-even now with my diet so restricted I notice the carb fatigue/weakness if I eat any carbs. My new routine is Paleo- with alot of almond-flour, almond-butter and coconut milk, coconut flour, unsweetend coconut. Dr. Pimental suggest low fiber since it stays in your gut longer thereby feeding the beasties, so now low fiber. So my diet is Gluten,Grain,Mold,Carb(low) Fiber(low) diet. I have maybe a tsp. of sugar a day in a hot drink but otherwise Sugar-free. Today for breakfast I had a turkey- lettuce wrap and became so fatigued I took a nap, I was only up for 3 hours! It is one thing to be on this CRAZY diet but to still be reacting to more foods seems CRAZY! If I stay away from all carbs I feel stronger and less fatigued so this is where I am now, trying my best to not feed the beasties.
I spoke with my Naturopath about my supplements he reviewed and all is OK. He gave me the script for VSL #3 and My new diet regime(no carbs) and probiotics have made me feel pretty good last couple days! We'll See Donna
Great News! I have been taking Oregano Oil off and on for 3 mos, it gives me cramping/diarrhea! Did you have to adjust to it? I was only taking 1 a day, taking 3@ 2 times a day seems extreme-any side effects? My Oregano Oil is from NOW with 55% Carvacrol. Thanx, Donna
I am so sorry to hear that you have been dealing with your digestive issues since childhood, just isn't fair. All I can remember as a child is being a glutten-eating like a horse and being extremely thin. I believe I may have had issues then but it didn't manifest itself til after chemo/radiation 2003. My mom always had digestive issues and passed away from NAFLD our heritage- Norwegian, Welsh, Irish. I suppose it's in the genes. My naturopath has suggested Berberine as a anti-bacterial, I'll add it to my list of what I am taking now which is:
1. Coconut oil
2. grapefruit seed extact
4. Oregano oil
I am also taking probiotics
1. VSL DS#3
2. Sachromesse Boulardi(sp)
3. Proboulardi (3 in 1)
My supplement list is
1. L- Glutamine
3. B-12 injections
4. liver detoxifying blend
5. Phyto ADR , Iodoral, Dhea, Vit D.
What I am going to add is
1. Betaine Hcl
3. Berberine and digestive enzymes
I finished my 15 day trial of Cipro and have already noticed how bloated I get at any meal, any food. In about 2 weeks I will have stool testing done to see how my bacteria have fared, hoping to have created some balance. I will also do breath testing , but for now I have not noticed any changes from treatment! Any suggestions?
You mentioned that in your past you had extreme weakness after carbs, just like me. I am wondering what enzyme I might be dieficient in? Is this some sort of metabollic disturbance that can be treated?
Thank You as always- Donna
My medical history is long! I had Cervical cancer in 2003 it was treated succesfully with both chemo/radiation therapy. Later that year I developed food poisoning but we blamed the bloody diarrhea on radiation enteritis-received argon-plasma therapy successfully. Since this time I have always had diarrhea til present but assumed it was the price I had to pay for the treatment I received to save my life. Dx B12 deficiency in 2005-unknown origin we blamed radiation therapy. The last 2 years I have been dx with latent Celiac, sjogrens and possible MG. My naturopath/md had Genova Dx CDSA done which revealed 2 pathogenic bacteria-and no lactobillus. Still knowone knew what to do with this info-a search via internet brought me to dx myself with SIBO. My G.I. agrees refers me to Infectious disease Dr.(nasty bacteria) he believes with the additional scarring from radiation that it will be very difficult for me to successfully be treated-but then hands me a prescription for Cipro!(I am currently being referred to another Infectious Disease Dr. for a second opinion). I have 2 problems-#1 Eradicating bugs and reestablishing balance in my poor leaky gut. #2 Finding out what/why I am always fatigued to the point of not being able to work-what is making me so weak? I am on a Grain Mold Sugar Dairy Free diet and I still have fatigue and weakness. I know that I do not metabolize carbohydrates, I know if I eat carbs my muscles weaken???? but I cannot understand this! Is it my poor radiated small intestine or is it the buggys and their toxins making me so ill. But then lets not forget genetics- both my mother and her sister died of NAFLD-non alcoholic fatty liver disease which has a direct correlation to SIBO! Low acid? If I have high carbs I get stoned, dazed, I guess I'm fermenting-therefore alcohol? Whatabout d-lactic acid? So many directions to pursue but not enough knowledge to piece it together---I'm incredibly frustrated and would really like to have my life back! Sorry I told you it was a long story!
P.S. by adhering to this diet I do not have diarrhea!
P.P.S. Dr. Pimental's book he believes that food poisioning(bacteria) is the "common thread "!
This is such a great article! It covers SIBO very well. I feel very fortunate to have a forum that educates-Thank-You so much for your hard work! I am classic SIBO- radiation enteritis, B-12 deficiency, carbohydrate malabsorption, increased bowel transit time-dx-auto-immune hyperthyroid,latent celiac,sjogrens. Have you read A New IBS Solution -Bacteria - The Missing Link in Treating IBS by Mark Pimentel? He's a G.I. from Cedars-Sanaii(sp) and has a specific diet guideline that is very close to Paleo-SCD. I have just completed 15 days of Cipro-really don't notice much diff-How were you treated? How long were you able to stay SIBO free, without reoccurence? Sorry for all the questions but my dear, you are now my SIBO authority- I hope you don't mind!
Questions about coconut Oil?
I purchased my first jar of extra virgin cocunut oil, suggested use 1 tablespoon 2 to 3 times daily.
I know I can cook with it as an oil but how else does one eat it. I am on a SCD/Paleo diet and trying to decrease fruits. Any Suggestions? Donna