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      Frequently Asked Questions About Celiac Disease   09/30/2015

      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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can 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-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is 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 Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Gluten Free Carbs Hindering Recovery
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Hello everyone. I would like to state that after almost a year gluten-free, DF, I still was not healing and feeling more fatigued than ever. I have been doing research and I will post some information specifically when I remember where I saved it. (Foggy Brain) That said, (for me) I am finding that all starch carbohydrates as in, breads, pastas, snacks, anything of that type are hindering (MY) recovery. It seems that the bad bacteria in the gut are kept very happy when given any of these types of foods even though they are gluten free.

The research and my experience tells me that following a mostly Paleo diet and gluten free I am just beginning to see a difference after all this time. I am hopeful that once I have healed I might be able to introduce a bit of these foods into my diet, of course time will tell. Finding the right supplements was crucial as was recommended to me by senior members. I don't know if this will help anyone, but I felt I should throw it out there. Finding this out I think is going to truly save my life. Best of luck, well wishes and feel better soon.

Best wishes and feel better soon everyone.

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I was talking to a woman a few weeks ago who said her Dr. told her she was allergic to carbs. I didn't ask what type of Dr. or what test was done. And I'm pretty sure that she was given a dumbed down version of whatever the problem is for her. But she said after changing her diet she has felt better and is now losing weight. I really do not think there is any one diet that will work for all of us.

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I was talking to a woman a few weeks ago who said her Dr. told her she was allergic to carbs. I didn't ask what type of Dr. or what test was done. And I'm pretty sure that she was given a dumbed down version of whatever the problem is for her. But she said after changing her diet she has felt better and is now losing weight. I really do not think there is any one diet that will work for all of us.

That's very interesting Juliebove, thank you for sharing. I couldn't agree more about the diet. :)

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Amen to that. I am in your same situation, Songbird. I cannot even have rice, and don't know for how long I will have to be grain-free and legume-free (I don't seem to have issues with dairy). My doctor originally thought three months would be enough, but now it looks more like nine months, and then we'll see. In my case, even smaller quantities of these cause me almost instant GI reactions and a worsening of my edema in the legs, probably because they exacerbate my protein-losing enteropathy.

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Hi

I too am very suspicious of the fact that high-carbs could be the problem, as opposed to specific foods themselves.

Have noticed that all my problem foods (over and above gluten) are high carbs!!!!!

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In my case, I looked at carb contents of foods and which bothered me the most. Some high carb foods didn't bother me. When I considered cc, it seemed a more likely source of problems. Super sensitive celiacs can react to even the low levels allowed in gluten-free foods. I was fortunate to have a GI who told me about this. Knowing about this enabled me to find a safe diet. I don't know if it could be a possibility for you or not, but I thought that being aware of this issue might help.

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I've noticed I can't eat sweets made with gluten-free grains, in any volume. One slice a cake for two days, fine. More than that - I start to feel bad (belly, blood sugar, cravings).

I can eat coconut/almond/full fat dairy sweets in a higher volume for longer without cravings, bloating, blood sugar issues. They also hit the "stop eating" button in my brain, whereas gluten-free grain sweets don't.

gluten-free grains+sugar= bad news for me.

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It's all such a jigsaw puzzle.

I do consider myself a super sensitive and have yet to find a so called 'gluten-free' food (processed) that I can eat :( .

I do have problems with carbs though, especially combined with sugar which I am also not tolerant to. High carbs give me cravings too, which are worth avoiding!

I find it very helpful here to know I'm not alone :) .

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Hello everyone. I would like to state that after almost a year gluten-free, DF, I still was not healing and feeling more fatigued than ever. I have been doing research and I will post some information specifically when I remember where I saved it. (Foggy Brain) That said, (for me) I am finding that all starch carbohydrates as in, breads, pastas, snacks, anything of that type are hindering (MY) recovery. It seems that the bad bacteria in the gut are kept very happy when given any of these types of foods even though they are gluten free.

The research and my experience tells me that following a mostly Paleo diet and gluten free I am just beginning to see a difference after all this time. I am hopeful that once I have healed I might be able to introduce a bit of these foods into my diet, of course time will tell. Finding the right supplements was crucial as was recommended to me by senior members. I don't know if this will help anyone, but I felt I should throw it out there. Finding this out I think is going to truly save my life. Best of luck, well wishes and feel better soon.

Best wishes and feel better soon everyone.

I too have this same problem - grain free is really helping.  May I ask what supplements you are taking?  I've been experimenting with various things, but would love to know what worked for you.  Glad you found an answer!!

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    • Thanks for all the input guys. Yeah I've had the vit/min panels and all that done and it was all normal. Regardless I've been supplementing with 1,000mcg sublingual B12 daily, 5,000iu sublingual D3 every few days, and since going keto, "ketovitals" which gives me some magnesium, potassium, sodium, and calcium. Also douse everything in pink sea salt and drink a ton of water. For months now I've tended to get at LEAST 10 hours of sleep per night... Usually. I still at times have terrible insomnia, which is what happened the other night, then had to get up early. Got a total of maybe 5 hours and still feeling it now 2 days later despite sleeping closer to 14 hours a night since. So Ennis, you mentioned about lectins, which I'm now reading about, and interestingly, certain things I don't do well with (usually uncooked veggies, aside from onions) seem to correspond to this. I even do fine with peas, but, I cook those. I'll have to start experimenting. The only part that gets me is that I'm reading grain-fed meats are high in lectins. I've read before that the supposed grain/grass fed difference is BS, and in fact the one thing that has never let me down through all of this is chicken, and I just buy the regular stuff for that. Can anyone confirm or debunk?
    • At 6. Months I was still recuperating for sure. Still had the dh but less of it, still had chronic pain in my abdomen but less of it, still constipated. I was in the stage of eating gluten-free processed foods, which was too much gluten for me, and keeping my symptoms active. In all actuality my C stopped a few months ago. I've been gluten-free for almost 10 years now.
    • 6 months for me stuff was still iffy. I was having bad days good days wtf days. Seemed like ANY change and my body threw a tantrum like a little kid. Yeah sleep patterns lol. I STILL CAN not change them I HAVE to go to bed at a certain time and WAKE at a certain time (9pm-4am)or my cycle goes all out of wack (also take a mid afternoon nap) , the entire day becomes ruined. Meals are the same way. There is this like 30-60mins window if I miss this shot my body goes all kinds of wonky. Mostly it become anemic and my got shuts down and constipation sets in. Always have to have hot fluids or this happens also.....no more cold drinks lol.

      EVEN if your levels are fine, supplementing is something many of us HAVE to do. For me I do not feel "Normal" unless I take my B-vitamins etc. Heck if i miss my magnesium supplement I block up, stop stomach emptying, get cramps, and generally vomit after day 2 if I eat anything. Supplementing is the new "Normal" for me.

      Still to this day food diary shows ups and downs with certain foods, I can not eat many foods, and others HAVE to be prepared in a certain way. heck up until recently I assumed it was a histamine issue or mast cell. Then I found some high histamine foods that should did not bother me go figure, then learned of something called Lectins and my prep methods that work with foods.....corresponds to lowering lectin content.....yeah SO I might have solved that mystery but am experimenting with it still.

      Health wise I am now doing much better and after 4 years found that "Perfect" diet plan for my body (at least for now). Putting on weight,  and trying to body build, still seems to yoyo with ups and days but less now.
    • Sorry to hear you are still suffering so. Have you had a vitamin and mineral panel done?  You should at least have your B12 levels checked. If they are not over 500 then try a subligual B12. That might help a bit.  I take a Stress B supplement but was able to drop the B12 after about 5 years. I know how hard it is to stick to a very regimented schedule as far as sleep goes. I suffer greatly if I don't retire and get up at the same time every day. I am trying to adjust my schedule a bit right now and paying for it. I have been going to sleep at 8pm and getting up at 4am now for a long time which cuts out any real social life.  The last few days I have stayed up till 9:30 or so and gotten up at 5:30 with a headache and generally feeling lousy.  I started getting up very early a few years ago so that I would still get enough sleep even if I have to be somewhere earlier than normal.  Is it possible to adjust your sleep schedule so that if needed you can be somewhere early and not have it mess up your system?  I try to wake at least 3 to 4 hours before I leave the house. It is amazing how much you can get done and how relaxed your beginning day is when you don't have to worry about having to get up early to accomodate an unusually early obligation. Please don't get discouraged. It can take a very long time to heal but for many of us we were ill for years before we finally got diagnosed. I hope you see more progress soon. Be patient with yourself as there are no instant fixes for us, unfortunately.
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