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 think I've read a similar study. I'm actually reading The Paleo Solution by Robb Wolf right now... I've been doing it for about a week and have lost 2lbs... eating 1800 calories a day and haven't started actually exercising yet. I head back to the gym on Mon. I'm really excited about this b/c it's Gluten-free Casein-free (which I am already) so it's not a stretch just to dump all grains and other sugars altogether! Thanks for the info, I really appreciate it!
my antibody tests came back neg!!! My body is not attacking my pancrease or thyroid! That means I just need to lose a few lbs, watch my sugar to keep my pre-d in tact (or get rid of it all together!)
something I did learn was that celiacs have a harder time with hypos bc of malabsorption which I completely agree with! I've only ever had 3 "high" readings (above 140) everything that's been the pain has been the hypos I can't avoid or come out of. Hopefully as my gut heals, those will dissipate!
I just went CF a few days ago and was fine until today. I chose to go CF (despite past elim diets that never showed me a problem) b/c I read that there's a significant correlation between folks with celiac and type 1 and producing antibodies to casein. So, since I'm pre-d I thought I'd skip the whole "moving to full blown diabetes" thing ;-) Or at least try my best!
I was doing fine completely Gluten-free Casein-free until tonight. I wanted some dairy so bad that I could've hurt someone to get a glass of milk. I wanted buttery bread, tacos for the cheese and sour cream and soup for the customary glass o milk that I drink with it.
Anyone else have a similar casein-withdrawal experience? BTW, I think I must have a sensitivity since a) I'm having such a hard time now being cf and I've lost a few lbs in a few days despite keeping my calories the same and only removing dairy.
Not a gluten-free biscuit... hence my admitting that I had NOT been gluten-free except for the past 6 months... hence keeping the antibodies going I'm sure. Not a good call, just the one I made. Too late now!
I got to see my endo this morning... went relatively well I guess, lol. He said I am pre-diabetic and hypoclycemic. Apparently my pancrease is not functioning like it should so I need to adjust my diet to accomodate this. He did bloodwork to test for antibodies possibly attacking my pancrease, thyroid, etc. I will get that bloodwork back Mon.
My A1C was 5.5 which is good.
I have big prayers going up that my results are clear and this is plain old type 2 in the making so I can work my hiney off and get it under control. I see my GI next week and my endo has asked that he send me to a dietician to look at a hypo/pre-diabetic gluten free diet. I am very much into Nourishing Traditions and The Hormone Diet and have read some stuff about the Paelo Diet. I'm going to dive back in, re-educated myself and make it my goal to reverse it if it's possible. As long as I'm anti-body free, that shouldn't be a problem. Id appreciate any prayers for this to not be an autoimmune thing!!!
Thanks for the input guys! I have always eaten relatively well... certainly not the SAD. I have my moments, but am not within the realm of "normal eating". Over the past 3 years I didn't eat crappy, but would just have a killer craving hit and since my syptoms aren't "immediate" I'd have a biscuit every 6-8 weeks. Not ok, but not the worst thing ever.
Generally, I only eat at sit-down restaurants and order grilled foods or sushi. I am into the raw milk/ soaked food, good fat thing. According to my bloodwork my cholestrol and all those numbers were perfect including my TSH. I cook our food, eat lots of fruits and veggies and have stayed away from "gluten free" packaged food for a year b/c I put on 30lbs with that crud. I could stand the first 15 but the next 15 were too much. My weakness and I don't need a lecture has been soda. I actually have stopped drinking it for a month before this whole blood sugar lollapalooza began oddly enough. I had also started exercising 2-3 times per week... light weights and light cardio before work. I'd lost 6lbs. I seem to have been punished for making a positive improvement!
I am sooo fortunate in that my endo has an opening tomorrow so I get to see him at 9:30 and then I go to my GI next week.
So, all that said... the crazy thing to me that makes me think this is type-1ish ominous is that I can eat a perfect meal and have a perfect BS. The next day I eat the same perfect meal and have a hypo or a reading of 160. When I have a hypo, I drink 4-6oz of soda (all juices make me feel soooo sick! and milk doesn't improve my #'s). Sometimes that puts me to a perfect place... sometimes 160's. Nothing is consistent to me. I imagine that (and this is only my imagination) that if it was just insulin resistance .. it would be consistently high or consistently low as in consistently resistent but I could be very wrong. However, my experimentation has found no consistency.
To answer the bloodwork question, he did the c-peptide, insulin fasting and my fasting BS that morning was 117 and at 124 after that particular (low carb) meal. That same meal got me a 150 the next day. Go fig!
Keep the input coming and I'll update ya'll tomorrow on what my endo says!
I originally posted in "Coping With" but didn't get any input and I realllly want some input, lol. THANKS!
I was dx'd with celiac 3 years ago via bloodwork and struggled with a gluten-free diet until about 6 months ago. I've been gluten-free since then 99% (the 1% being accidental). Over the past week I've had some bouts with low blood sugar. My dr did some bloodwork and I've monitored in the meantime. He's sending me to an endocrinologist in a few months (earliest appt).
My own readings are that I wake up (fasting) at between 105-117, avg 115. Throughout the day, my sugar ranges from 60 (like this morning) to 199. My average 1hr after a meal is about 150-160, 2 hours is around 130. Those aren't HORRIBLE, but pre-diabetic to me from what I read at Joslin's Center online (harvard diabetes people).
My pcp is more concerned about the hypo than the higher numbers. I'm bothered by the fasting level b/c those are consistently above the threshold. Not diabetic, but borderline. Based on the irregularity of the numbers I think my pancrease is kind of "giving out". I say this b/c on Sat night I ate salad, soup and had a small soda... 199 at 1hr. On sun to experiment I had the exact same meal, same qty, etc and it was 83. Basically it's doing it's job sometimes and not others... sometimes way too much insulin (like hitting 60 this morning after a glass of milk) and sometimes too much like hitting 199 after the other meal.
So my bloodwork.
c-peptide 1.3 Normal is .9-7.1
insulin fasting 4.8 normal is 1.9-23
I am within normal range on both of those. However, I am hugging the very bottom of normal on the c-peptide. This was proof in my mind of what I had thought... my pancrease is still working but not quite enough or well.
So, I'm looking for some "expert" opinions. Is a c-peptide thats .4 away from abnormal normal enough? Coupled with a low-end of normal insulin level coupled with high fasting glucose levels, hypo spells and I'm having the typical blurry vision and thirst/urination that you'd only see with much higher levels (so I assume).
Also, does your pancrease "start shutting down" like over a few months/weeks or does it just quit all in one day? Does that make sense?
I'm going to pay careful attn to my diet over the next few months til I can see the endo. If I can keep things where they are and not hit true type 1 that'd be awesome but does it matter? If my pancrease is going out can my diet impact it? Also, I assume this would be type 1 as everything I've read about a low c-peptide indicated type 1 rather than type 2.
Thanks so much guys!
DX'd Celiac via bloodwork 7/08
I've also had issues with peripheral neuropathy. MS came to mind when I was researching but I just tried b12 injections first. I had some bloodwork done last week and my b12 levels were off the chart high BUT if I go more than a week or so without it, the neuropathy comes back. So, that said, just because it shows "normal" doesn't mean it's enough. Plus, my research shows sublinguals are no more effective than pills in someone with malabsorption issues. I'd go for the shots.
I buy mine from an place online. Message me for the site, I don't want anyone to think I'm posting to push a website since I'm new here. They have a dr on-staff who apparently will give you a Rx with a brief survery. I did 1ml once a day for 2 weeks before the neuropathy went away. I now have to do 2 doses per week to keep the neuropathy at bay. Don't worry, you can't take too much, it passes out in your urine.
I haven't gone yet, but will be seeing Alberas in Dothan at Digestive Specialists in Dothan next week. I will let you know how it goes. You'll likely have to go to your pcp and get a referral. They could perform the blood tests and then send you to the GI as well. That's what mine did. HTH!
It really sucks to know that you've had the information all this time and haven't used it and now you're sick because of that. I don't say that to be condescending. I did the exact same thing and could kick myself. I'm now knocking on the diabetic door (still testing, probably T1) and I know it's MY fault b/c I kept eating gluten for 2.5yrs after my diagnosis b/c I never had the intestinal problems from it. Just bone pain that I'd had forever so I was just used to it.
I hope you're feeling better by now and are on your way to being gluten-free!!
Wow Ray, bless your heart! I'd rather have all my symptoms put together than yours alone! That being said, it's not unusual at all to become more sensitive as you become gluten free. I know that when I was eating the gluten and cheating it never really bothered me. Now that I've been super strict about it for several months, the tiniest bit makes me so sick. Best of luck!
I'd second what Marilyn said and also consider you could have a secondary sensitivity. It's very frequent and corn causes alot of problems for alot of people... have you ever tried an elimination diet?
I'd say maybe do a little investigation into candida overgrowth... if you are having intestinal discomfort it could be due to fermentation of unprocessed sugars. Candida and gluten intolerance have alot of common symptoms and I believe personally go hand in hand. Just google candida overgrowth (if you haven't already) and you'll find a ton of info about symptoms. Your GI will have little interest in this and will never agree that you have it (or it's very unlikely). You could see an alternative practitioner for some help as well.
I know this post is a few months old, but I did want to jump in and second the recurrent shingles with Celiac. I was dx'd with celiac disease 3 years ago. Within the first year of my dx, I had shingles twice... on my face... on each side. It was definitely shingles and not DH. I am googling and ran across this post because I am sitting here, quite confident that I've developed shingles on my left side. My entire side is burning, searing and aching with a few bumps popping up. The pain is identical to the bumps and sensation I had on my face... just x10. I've been beyond super stressed out for several months b/c of financial problems and have not stuck to my diet like I should, therefore I'm certain my imuune system is super depressed right now. On top of all that, I don't have health insurance right now so this is going to suck really really bad. I'm pretty sure I don't have anymore neurontin or zovarx :-(
boohiss... someone needs to do a study on herpes zoster and celiac apparently.