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 voted in the Paleo catergory although I'm not ultra low carb. I eat low-moderate carbs with starchy vegetables and some fruit. I've been off and on primal/paleo since march of this year and it's actually how I learned about my gluten intolerance. I never knew how many stomach/digestion issues I had until they were gone for a while and I would "slip" off the diet, feel horrible, then realize I used to feel like that all the time. Awful! I am so much happier now.
And yes, it is SO MUCH easier just eating paleo than worrying about making gluten free replacements for SAD foods and finding "safe" processed foods. Once those things are out of the picture most of the anxiety, stress, and annoyance of it all just goes away. I've tried plenty of gluten-free replacement foods and none are really worth the time and money for the poor nutrition and taste of them.
Right now I am on The Whole 30 plan for november. No dairy, no sugar, basically paleo but stricter and my stomach has never felt better than it has the last few days.
Grains are for the birds...or whatever animal is supposed to eat them but they don't agree with me.
It really depends on you. I know I can only eat about half an apple with cheese or nut butter because if I eat a whole one it messes with my blood sugars. You have to try some different snacks and food combinations and just pay attention to how you feel after, if you get a crash after apples and PB that may be too much sugar for you(apples have quite a bit of sugar, a medium apple has about 20g sugar plus PB..it's a lot.) Do you like avocados? I find those easy to digest and they are so healthy.Avocado, hard boiled eggs, carrot sticks with hummus, cheese, and beef jerky all make good snacks.
Also for me I really need to have a low carb breakfast. If I eat gluten free bread or fruit for breakfast it sets me up for a roller coaster of blood sugars all day. I generally keep it low carb for breakfast and lunch and then having a sweet snack before or after dinner doesn't mess with me since my blood sugars are more stable later in the day. I also eat most of my veggie carbs like squash or potatoes with dinner. Experiment with eating carbs at different times of the day and see what works for you!
Just to add if you're still feeling inflammation of your digestive tract some of the best things you can eat for that are also low carb. Fish, especially salmon is very anti-inflammatory and I find it easier to digest than other meats. I often eat salmon for breakfast with a few olives. Spinach and other leafy greens are anti-inflammatory. RICE, white or brown is a very inflammatory food so it hurts you on that front too What was your dietician thinking!?
If you're experiencing hypoglycemia the absolute worst things you could eat are grains, white potatoes, fruit, or juice of any kind, especially without eating fat and protein at the same time to help balance it. Everyones advice here is right on. More protein, more healthy fats. Cut way back or eliminate grain and sugar carbs and eat squash, sweet potatoes, vegetables, and legumes for carbs but still always eat these with fat and protein. Digestive enzymes may be helpful if more fat and protein are hard to digest.
I don't know if anyone has told you that hypoglycemia can be a precursor to diabetes. It means you're overproducing insulin to compensate for the amount of carbs. After a while of doing this you'll become insulin resistant and you're body won't be able to keep producing so much. Both of those things will lead to diabetes. You have a chance to stop it before it happens by eating a lower carb diet though and balancing your hormones. I wish someone had told me all this when I use to experience hypoglycemia but now I'm prediabetic with other hormonal problems to go with it. I'm still working to reverse it with some success by eating low carb and exercising but i sure wish I knew sooner! Good luck!
Have you ever had tests for hypothyroidism? Not just TSH but the antibody tests as well? low thyroid can cause a lot of symptoms that overlap with Celiac like GI symptoms, vitamin D deficiency, bone disorders, and other hormones being off balance. It is strongly related to PCOS which you may have with the ovarian cysts?
That's my only thought other than gluten intolerance/Celiac. Try the diet as well as getting your thyroid tested if you haven't already. Good luck.
Hi again. Good to hear that you're done with the endoscopy! Now that's out of the way and you can hopefully start healing on this diet. I also started researching this because of chronic pain I've had for almost 3 years now. It started at the end of my pregnancy with my twins and just never went away. I also have lower body pain. It is SEVERE in my hips sometimes and also in my lower back, legs, knees, and ankles. I have no clue what it is and only just started trying to figure it out with a doctor...maybe we have the same thing .
Do you have any other Gluten intolerance/Celiac symptoms or family history of autoimmune disorders that made you think you were at risk?
Like everyone else said, it's absolutely possible to be gluten intolerant or Celiac without positive tests or biopsy. I guess only time will tell. I'm hoping that this is the answer (for both of us)
I've been on the diet for 2 weeks and no improvement in pain but I did know beyond a shadow of a doubt that gluten does awful things to me digestion wise and I have a strong family history of autoimmune disease so even without positive tests I am staying the heck away from gluten
Hi. I had really bad reflux for years. Cutting back on spicy,fatty, or fried foods did not help at all. When I went completely grain free with no fried foods for a while it completely cleared up. No problems even with spicy food or meat as long as there are not grains. Just being gluten free for me does significantly help but not eliminate the problem. I think all grains can be a problem so you may want to undertake an elimination diet and see if your symptoms clear and then start adding grains back in. Start w/ rice since that's least likely to cause problems. The other factor I think helps is eliminating vegetable oils like corn oil, soybean, etc. Just stick with olive oil and butter for cooking if you can. Hope this helps! Oh, and I can eat rice and sometimes corn now without problems as long as I keep them limited in my diet. I think my body just needed a break from these inflammatory, acidic foods
That study is total bs. you can be just as healthy or healthier than others who can eat gluten. I've read over and over that the increased risk of malignancy drops down to that of the general population after going gluten free for 6-12 months. You don't need to worry about that. And your husband is so sweet to go gluten free for you, I'm sure he didn't marry you because of what you could/couldn't eat and it doesn't matter now. Besides,most men are pretty darn happy with more meals of steak/potatoes My husband is also eating gluten free for me and our two small children and as long as I keep snacks and good food in the house he has not even blinked an eye about the change. We still can go out to eat and have been on some small trips recently where I just packed a cooler of food for the 4 of us. It saves money that way too!. The restaurants you can eat at may be more limited but it is possible to find some place to eat just about anywhere. You just have to accept that sometimes you will be stuck eating a boring/ plain meal at certain places for safety but eating is only a small part of traveling and having fun so don't stress over that. Everything is still just as possible as it was before. It does take time to adjust but you will get to a point where it all just feels normal. Hang in there and try to focus on all the good things in your life!
I recommend reading Celiac Disease A Hidden Epidemic and Healthier without Wheat. Two very informative books that will set the record straight about how many people this affects and about the cancer link. Chances are you probably do know others with this disease or gluten intolerance and they just don't know it yet.
I don't know why someone would be offended if you can't eat something that you have an intolerance to. That just doesn't make sense to me. I've never had this happen, or maybe I just don't care enough to pay attention since I am not an easily offended person I never really think about silly things like this offending others. Does that make sense Bringing a large dish to share with everyone that is a naturally gluten free item is a good idea. Salads, dips with chips or veggies, shrimp cocktail...just take your portion first!
Oh, that reminds me I've heard the Carlson's D drops work really well but I'll look into that brand too and see which is cheaper. At this amount I'll be out of the one's I have really soon. I hope you're right and my thyroid problems are just from low D causing it to not work right. My mom has autoimmune thyroid disease so that's something for me to look into once I can get a better GP or a referral to an endocrinologist
well, that's good to know. And, yes. For me I know I already have an answer. If that's the case and my doctor wants to do an endsoscopy just to test for Celiac then I don't know. I absolutely would never touch gluten again for anything after how sick it made me this last time around so maybe they will find something, maybe not. I've read a lot of people on here say it took a long time for their villi to heal so I guess I'll see if I decide to do it.
Yeah, my doc wouldn't run the anti-gliadin or any Iga tests either, only Igg so as not to waste money I guess. She even said that the insurance might not cover the DGP. I told her I don't care, I'll pay out of pocket so I'm anxious to see the results of that. From what I've read today it has a better ability to detect Celiacs after they've been gluten free for a while.
Wow, I'm glad to hear it can come up that fast. In the last 7 months I would have thought I would have atleast came out of the deficient range with all the D I've been taking. Maybe I do have damaged villi that aren't recovering so well
I really appreciate all the replies. This gives me a little hope that maybe, someday soon I will start to feel alive again. Not today however, lol.
I do wonder just how many of my symptoms are caused by the low vitamin D and Iron. I know vitamin D is so important. I was supplementing before I even started trying elimination diets to see if it would help and it hasn't but clearly I'm not absorbing it well, or at all. I'm starting on 10,000 IU a day now in liquid capsule D3 form. I wonder if I should take even more. I am really interested in what the gastro will tell me about why I'm not absorbing this. I do truly believe I have hypothyroid problems. My TSH was 2.4 which I think is high and I can't convince my doctor to do tests like Free T3 and T4, TPO or anything. I will get those tested with a new doctor I guess. I have every single symptom of hypo when I look at the symptom lists I can just check them all off. Dry hair, nails, brain fog, trouble concentrating, memory problems, anemia, etc.. I have them all.
Anyway, how long did you have to take more vitamin D to get your levels up. I've been taking a lot for 7 months now! It seems like I've given it a lot of time at pretty good doses but maybe not?
Also, are you eating gluten still for the endoscopy? I'm not eating it anymore. I don't know when I will be able to get into the Gastro but I figure even if it's a few weeks into gluten free if there was villi damage it's not going to just be miraculously all better after such a short time, what do you think?
I guess I didn't know that gluten intolerance can cause malabsorbtion just like Celiac but it makes sense. All of my life I have tried to eat nutritionally dense foods and get vegetables, meats, fish, etc... because I have always felt so crappy, always had off and on GI symptoms and tiredness and I figured I was eating wrong but all along it had nothing to do with that. I was not absorbing key nutrients for my health and no matter what I've just kept getting sicker every year until I got pregnant with twins that sucked the life out of me basically . Whatever nutrition stores I had were taken (thankfully) by them and all of my symptoms were 100X worse after my pregnancy plus a whole list of new symptoms like the chronic pain and brain fog. That was 2.5 years ago. I feel like I have barely been living ever since and I haven't been able to enjoy my children as much as I should. I'm just too tired. They also have syptoms of nutritional deficiencies and gluten intolerance and have some GI symptoms. They're off gluten as well now.
I do need to find a good doctor that will just work under the assuption that I have Celiac and treat me as such. I'm just waiting to meet w/ the Gastro and see if he will be helpful. And, I do want to get Igg food intolerance testing. I definitely have GI symptoms from eating too much soy or soy in processed foods and sometimes I get facial flushing when eating it. Dairy may also be a problem. I've had asthma since I was 11
Thanks for listening and replying! I am just so desperate to get all the answers I need and I know everyone here can relate
Thank You for all the information. Good to know that the Gastro can check for enzymes nad other possible causes. I've had such bad experiences with doctors I think he'll just want to to do the endoscopy and if I haven't been eating gluten/don't want to then he won't want to bother doing anything else. Yes, this is how I think of doctors. Maybe I'll have better luck.
I know gluten is a serious problem for me now after going on and off it so many times. That's why I said "just" gluten intolerance. From what I've read the complications from gluten intolerance can be just as bad as or worse than Celiac depending on the person. But, how to get my doctors to understand this and treat me like a celiac? My doctors weird about this...I had to push her for the celiac tests and she only wanted to test ttg and go from there and I said no, run them all now because I won't be eating gluten later and then she came back with the DGP test so she seems to know something about it. I also had to ask for the bone scan and a specialist to which she agreed but at first she just said like "yeah, there seems to be some malabsorbtion and possibly due to gluten intolerance so just take more D and Iron and we'll retest later" she didn't even test for other nutrients even though I asked over and over to test for anything that is commonly low due to Celiac but she wouldn't. She's actually getting me those referrals and sending my labs and I'll find a new doctor. Atleast she's agreeing to some of what I ask for so it seems she knows but maybe because I have crappy insurance is hesitant to offer up too much? I know the gastro will be covered fully though.
Dixiebell- I'll try taking that much D, that sounds like a good point to start at. I was taking I guess 25,000 max per week so 50,000 sounds good.
Maybe I'll end up getting an endoscopy anyway. If there's more they can check for that's good to know!. I did take antacids for heartburn for years so there may be damage from that. I don't need those anymore, it was the darn gluten causing heartburn all along
I got some blood work done a week ago. My doctor tested for celiac with two blood tests IgG-tTG, and IgG-DGP. She said those are the most sensitive and specific. And she tested my vitmain D and did a CBC.
So, the tTG test came back at 3. The DGP is not back yet. I was eating gluten as much as I could before the test which was full gluten for 2.5 weeks before the test, 2 weeks off gluten before that. on and off gluten for the 3 weeks before that...and off gluten for a whole month before then.... I kept going back and forth because I would be in too much pain and had to give my body a break. So, this was my version of a gluten challenge. It's all I could do. I was light-gluten for 4 months before that so I'm thinking I never gave my body too much of a chance to recover since my strictly gluten free periods were short but maybe not. It doesn't matter since I have a positive dietary result (from what I can tell) so I'm staying gluten free for GOOD now.
So, here's my questions. Is the DGP test going to tell me anything different. She said with the tTG being negative it's unlikely that the DGP will come back positive. If they are the same test then why did she run both?
And, I have low vitamin D (21) even though I've been supplememnting 5,000 IU 3-4 times a week and getting midday sun all summer and I'm anemic (I eat lots of meat, beans, greens so there's no reason for that either). She said it looks like iron deficiency anemia. So, she wants me to see a gastro for malabsorption but what are they going to do for me? Wouldn't an endoscopy be a waste of time...I really don't want to do that. Is there something else that GI doctors can do? and she wants me to get a bone density scan.
Am I on the right path here? Could I still have Celiac or is it likely "just" gluten intolerance. I have everything from pain to fatigue, coordination and neuro problems,depression, GI symptoms from eating gluten (that are still not resolved but better) and possibly other food intolerance. Will the GI doc be able to test for other food intolerances?
I just want to make sure I'm getting the right tests and everything checked out because I've been without insurance for a long time and I've had health issues possibly due to Celiac for a really l o n g time! I just want to feel better. I will not go back to eating gluten. If they wanted me to do another gluten challenge for an endoscopy there's no way!. Having an official diagnosis is not that important.