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
So many things going on in my head after reading the newest posts.
GI doctor doesn't think a second SIBO test is warranted at this time. I did respond to the antibiotic treatment for it.
I can't tolerate melatonin, but the tryptophan info. is something I will look into.
I haven't done a strict elimination diet. I eliminated gluten, soy and lactose but I still eat peanuts, corn-based products, beans, rice, etc.
GI has questions about me having Chrohns but hasn't done anything to test me for it. When I read about it, I don't really fit the description. I think I have big-time food intolerances. I saw an allergist yesterday and will undergo a series of tests in a month. He did blood work yesterday but that never seems to yield any info.
I don't understand why I am so bloated/gassy and really uncomfortable every time I eat and it gets worse in the evening/night. If it's irritable bowel I don't know how to treat that. I tried a fiber supplement and it made me sick.
It's amazing that you, GottaSki" were able to determine what foods made you experience different emotions. I feel like I eat almost nothing every day and I feel less and less hungry, yet still get symptomatic. I guess I really need to commit to a strict elimination diet as well as a food journal.
Some here may relate - I am sole provider and caretaker for my disabled 20 year old daughter and work full time. Finding time for "me" - to take care of me - just seems impossible.
Janpell - It's time - I have to commit to the elimination diet and food journal. I do weigh myself morning and night. Difference of 2lbs at night (higher).
Interesting note: my latest CT still shows generalized inflammation throughout GI track. No one knows why. I'm going to guess and say it's possible food allergies that have really upset my immune system as well as caused chronic inflammation.
Thanks. Going to request another SIBO. Colonoscopy repeat is due to size of polyps found in August. It is hard to figure out food intolerance which is a bit frustrating. I have terrible allergies but need to look even closer at what I'm eating - may be even more to cut out. I can look at corn- based foods to see if I am reacting to any and also see if my anxiety levels follow a pattern with what I am eating. I haven't kept a food log because I pretty much eat exactly the same thing all the time but there are subtle changes that I will now look more closely at. Will also ask to have iron checked. All good info - thanks so much!
I'm scheduled for next colonoscopy in February. First one in August was so awful, as many may remember. Spent 4 hours in recovery room sick as a dog - severely dehydrated. Not looking forward to this next one. I began to feel better after the xyflaxin ended but still struggle with my gut. I'm seeing an allergist in February too and will have all the Ig tests, among others. I have huge allergies so maybe this testing will yield more helpful info.
Thanks for suggestion of eliminating corn and trying nettle tea. I have remained gluten, soy and dairy free since June 25th. I don't eat corn in general, but it could be in some other foods. I've always found corn hard to digest.
Done with Xiflaxin and actually, finally, feeling a little better. I am taking Align probiotics. I use Digest Gold as digestive aid (discovered it here) but I'm going to talk with GI about pancreatic enzyme. Can you tell me what GMO stands for?
Still have bloating and often have pain after eating. I think GI is going to send me to an allergy/immunologist to look at my Ig levels and see what foods I may be allergic to - maybe this can cause pain?
Will have another colonoscopy in February but will be done in-patient this time. What a nightmare in August. At least I finally have a really good GI doc.
I learned SO much here and thank you all for help with the journey. I finally saw a GI (who is great). She did a genetics test for Celiac and it was negative. Also did SIBO test and was positive. Lots of bacterial overgrowth. I went on Xiflacin for 10 days and then my tongue started to swell so had to go off but she thinks it was likely long enough anyway. Today I had a gastric emptying study and it was normal. I am still sick - but now we have to go the route of food allergies. Still nauseous after every bite of food, still can't/don't eat dairy, soy or gluten and still have awful bloating and pain. She's going to test for gallbladder function and re-do the kidney test.
I think about all of you and what you struggle with and how hard it is. I carry you all in my heart now!
Been taking digestive enzymes every time I eat! *Digest Gold*
I know I'm not digesting properly. The PCP tested my vitamin levels and only D came up low and I've been taking heavy dose of D (prescribed). At least I don't think anything else was low. It's hard to get her to tell me exactly what she has tested.
Mood, sleep and hair definitely affected. I will push for SIBO and HIDA scan for sure! My PCP supports both but wanted me to see GI and go forward with the GI. Someone here mentioned that the Beth Israel Deaconess Hospital in Boston has a celiac clinic and top docs. I'm hoping SOMEONE is going to figure this out but after reading so many stories shared on this site I worry that they never will.
Yeah-it's exactly like that. Nothing seems to sit well.
I did use olive oil instead of vegetable oil this time. I ate this same meal about and week ago and didn't have the same reaction then. No spices but the sweet pots weren't organic either time. Sure did me in though and not going to take a chance again. :-(
Didn't know where to look for answers so I'm continuing this ridiculously long thread..
Biopsy results show inflammation in lining of stomach. Polyps: 2 benign, 2 pre-cancerous. Recommending another colonoscopy in 3-6 months (done inpatient due to the complications with first one.
And, of course, "no evidence of Celiac", but I have learned here that without being on gluten my test would be negative.
Here's the thing. I still feel awful. I'm chronically tired. My hair is thinning and I feel kind of down. Back to work full time and just dragging through. Being off gluten, soy and dairy for close to 3 months now, I thought I would feel a lot better. When I do test myself (trying to make a believer out of myself since the doctors don't believe)with gluten I feel awful. The first time it took hours to "come on" and wasn't too bad. Since then, it takes a very short time and I feel lousy for a couple of days!Soy and dairy do this also. Last night though, I ate roasted sweet potatoes, jasmine rice and roasted carrots and I was nauseous all night. No appetite today and still feel like it's sitting like mud in my gut. Mostly I think I shouldn't eat at all.
I have appointment to FINALLY see a GI specialist on Oct. 1st. But ... I don't have confidence that anyone is paying attention. Still losing weight.
PCP says no cancer in pancreas or liver (how does she know this?). Kidney function is fine. Haven't had the gallbladder function test yet nor the small intestine bacterial overgrowth test. PCP wanted me to wait to see GI. I'm going to insist on both tests.
Anyway, remember "losing hope"? Kinda feels that way. Thought the depression, fatigue and general malaise would disappear once I changed my diet. Bugger.
Recovered from colonoscopy today. Feeling hydrated and no more "going". The recovery room did give me IV fluids. 4 bags! And they kept saying that I was "unusually dehydrated". I told them this was not a screening but a diagnostic test and that I have been dehydrated for weeks. No one listened. Anyway, I feel hydrated today (was able to keep down all that gatorade) and ate a little as well.
I did have someone with me but they wouldn't let her in to the recovery room or talk with the doctor. I barely remember what the doc said - but I do remember that he told me to see a surgeon, have another colons. in 3-6 months, that he took out 3 (4?) and one was a "large sessile". I had to look that up on google!
Thank you so much, Bubba's Mom for telling me not to freak out. Reading what you have been through helped me to let go a little of the fear and just wait and see.
I still need answers to my pain and all that inflammation. I want my gall bladder, pancreas and liver checked. I want to know my immune levels (IGg, IGe, etc) and I want to have allergy testing for foods. I need that new doctor to come back from maternity leave asap!
JustLisa - I was feeling alone, but your post helped me to know that I'm not really alone. I have all of you! Thanks...
SquirmingItch...I felt your hug all the way across the internet. Guess I really needed it.
I plan to talk to the WITCH tomorrow - for all the good that will do!
By the way...my name is Kimberly
I am not doing well. I had endo and colonos. yesterday and it, quite literally, nearly killed me. I was severely dehydrated when I went in and had told the GI this - along with my history for the past few months. I also explained that I was feeling very weak and that the clean-out had been severe (I was still "going" 15 hours after started the prep). I also explained that I was highly sensitive to medications. Then I was given both propofol and fentynl. In recovery my blood pressure dropped very low, I couldn't focus and had to stay in recovery for 4 hours. There were all kinds of doctors and nurses there but I don't remember much other than feeling awful. I don't ever want to go through that again! Then the GI doc said he removed 3 polyps, 1 of which was large called a sessile polyp. He told me I had to have another colonoscopy in 3-6 months. OMG. Now, of course, I'm scared it's cancer, scared to go through this again and no sign of celiac (which he simply dismissed despite me telling him that I had been off gluten since end of June). He told me I should see a surgeon but I don't know why. I continued to have diarrhea last night and lots of nausea. This morning I am feeling light-headed and weak. I got some GatorAide and will be drinking this all day but think I need some food too.
Needless to say, I'm a bit discouraged, feeling emotional and generally yucky.
Anyone else have this happen?
Well, I guess since I started the thread I should finish it as #100.
My (fired) PCP called me tonight to "further discuss" the results of my CT scan. She is "extremely concerned" about the level of inflammation and has asked me to have a colonoscopy and endoscopy "stat". Says that the inflammation is profuse throughout intestinal tract and lymph nodes are slightly enlarged. She brought up cancer and that scared me. She says that because I am still sick after I eat - even though I am on a strict diet - that it's "not likely what you are eating" ... I doubt that because of all that I have learned from this site. Maybe she should come on here and learn!
Anyway - what I want to say is THANK YOU. Without this site, without this thread I would have lost hope. It was here that I found answers to my questions, questions that I didn't know I had and a lot of compassion. I don't know what the future holds for me - maybe celiac, maybe inflammatory bowel disease, maybe food sensitivity, maybe cancer. But no matter what I got through this summer because of all the help I got here. I got educated and that's worth its weight in gold.
I also wanted to say that I think of each one of you and I often come and re-read your posts. I hear your own painful journey/s and am honored that so many of you shared with me here.
I know that this thread has taken on a life and it's rare that one goes this long. Thank you all so very much.
I'll be around - reading lots of posts, continuing this journey along with all of you.
Results of abdominal Ct scan arrived. Inflammation of unknown origin. Ha!
Whatever it was that I ate (corn muffins or not) it's hit me hard. I am in pain and not able to tolerate any food. If my insides are so inflamed maybe no solid food is better for a while. I was doing so much better and then, wham! Ate a plain baked potato last night. Ended up with more pain, bloating and cramps. But that is happening now no matter what I eat so it could be inflammation rather than the actual food, right?
I knew I spoke to soon in my earlier post.
I am hoping that new doc will connect me with a GI though at this point I don't have much confidence in doctors.
I've been doing relatively well. I added a digestive enzyme along with probiotic, prilosec and have been gluten, lactose and soy free for several weeks now. I did ONE day of gluten challenge and while it took hours before I reacted, it wasn't pretty. So I'm totally committed to my strict diet regimen. BUT ... I'm stumped. I bought and baked corn muffins from Really Great Food Co. - the ingredients were White rice flour, potato starch flour, organic cornmeal, sugar, aluminum-free baking powder, xanthan gum, salt. I used 2 eggs and Almond milk. They tasted great. And within 2 hours I had cramping. I didn't think it could be the muffins so today I ate 2. And the cramps came back and I got sick.
I don't have problems with the almond milk and if I eat eggs I sometimes get a rash but haven't had any problems eating food with eggs in it.
I took a gluten-challenge for just one day. I was hesitant but did it. Thought I would do it for at least 3 days. No way! I was fine for about 8 hours. Then stomach cramping, PAIN, and achy all over. Today I am weepy for no reason and feeling anxious as well. I hate this feeling. I'm back to eating only gluten, soy and lactose free today although I don't feel like eating at all.
May not be celiac but it sure is intolerance.
Given that Celiac is an autoimmune disease - is it treated differently than gluten intolerance?