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 am glad you got an answer I know I cannot give up on figuring things out - for my little ones benefit. Sooner or later, something will pan out. It is just getting to that day! If it is just "IBS", I pity anyone who has to live with this on a daily basis It's truly a disease that they will not/can not treat, yet affects your life to an extreme extent on a daily basis.
I am just hoping that my blood work shows something this time around. There is a possibility that my previous 3-4 mos of gluten free lowered my levels too much to show positive.
I had a scope done in 2006. At the time when my tummy upset symptoms all started. About 6 mos. After my son was born - everything went downhill for me. I had diarrhea that lasted for about 6 weeks. Lost 10 lbs - went down to 92 lbs...etc. That is when they did a scope. By the time they did it I was only really consuming the meal replacement drinks and occasionally grilled chicken or rice. The doctor has since left teh practice and I wasn't ever able to follow up with her.
In August 10' I let them do a colonoscopy where they just said it was normal and I have IBS. I have has a Hida Scan done twice in the past two years, as well as had a barium follow through and a gastric emptying Scan. The GI doc is no longer seeing me, and if I call with any pain -he says to "follow up with my regular doctor" because I just have IBS and lactose intolerance:/
It is a very frustrating situation to say the least. I have a full-time job, as well as two little guys (11 and 5). I just feel like something isn't being caught, and it is very difficult to continue on with daily pain. I understand that IBS is a valid disease, and is unpredictable, however this current pain is sharp and unrelenting. It isn't "Spasm'ing" or cramping. And I certainly do not have any diarrhea, so I know it isn't a queasy tummy or anything like that.
My general family physician thought it was a deep muscle strain, until I had a few follow ups in the past week and the pain is still present. He has referred me to a surgeon to see if it may be a hernia (Although two doctors in his practice examined me and couldn't feel a hernia, and CT Scan and Ultrasound are clear).
I do not want to have any surgery if it is merely severely inflamed intestines from a food intolerance. That would be just my luck
I feel like I am forever going through this cycle of "could it be a gluten intolerance", or not. I have had bloodwork done a few different times, but have never really gotten a positive reading. The closest my numbers came to being positive was having a TTG Iga of 16 when it said that weak positive/reference range was 20-30. My total IGA at the time was around 300, so I know I am not Iga deficient.
My symptoms are numerous, and I constantly wonder if my issue is gluten. I have been trying to continue eating gluten until someone is actually able to diagnose it as the problem. Six months ago, I tried a gluten free trial for 3-4 months. I had little improvement. It seems like bloating went away, but I was still having some issues. Could have been my lactose intolerance or another intolerance though since I was told I have many food allergies.It is just very difficult to stick with a gluten free diet without knowing if it is helping.
Recently, my main concern is a sharp right sided pain that has yet to be diagnosed. On 2/2/11, I got a sharp pain that wouldn't go away. It was knife-like. Sent me to the ER, and after a Cat Scan, bloodwork, and urine they sent me home saying I may have strained a muscle in my abdomen. fast forward almost a month later, I still have this sharp pain and swelling in my abdomen. They have ruled out gynecolocial problems such as a cyst by doing a pelvic ultrasound, They also did an abdominal wall ultrasound on that side, and found nothing. So....here I am, with a sharp pain and no explanation. It just feels as if something in there is inflamed or twisted or swollen. I cannot describe it any better than that.
My question, is can your intestines become so swollen and inflamed from an undiagnosed gluten intolerance that it would cause continued unrelenting pain? It is daily, and it does not go away. I called my Clevelend Clinic doc, and she ordered another round of celiac testing through QUEST, as long as a Vitamin B6, B12, and a Vitamin D. Ive never had vitamin levels checked, so maybe the celiac tests along with vitamin levels will help them see something??
I really do not hear complaints of knife-like side pain on here, so I just wondered if this was a possibility. I have had bloating, constipation, indigestion for about 5 years - they just say it is IBS. I can deal with that - just not the sharp stuff :/
Well I don't really have a question - just a request for prayers. Please keep me in your thoughts tomorrow as I go for the Gastro appointment I have been waiting for three months now. I am praying this doctor can diagnose me - and hopefully give me a plan of action for the constant daily pain. If I do not get positive results this time...I really do not know how much longer I can keep up working and taking care of two little ones in constant pain.
I envy that you were able to eat Cayenne Pepper (As I sit here eating my cream of rice with a little butter and salt). That surely would have landed me in the hospital with severe pains.
Was the halibut made at home or in a restaurant? Was it cooked properly? Did it have some sort of butter baste on it and you are lastose intolerant? Those are a few things I would wonder if it gave you such horrible diah.
I agree with someone else here - if you are very concerned about sandwiches in particular - then use Udi's bread. If you cannot find Udi's bread - look to their website online...they ship direct to you. If you have a local store your store can become a supplier. I live in a very small town, and have one health food store available to me. I persisted with them to order Udi's bread....after a few months it all worked out and they now stock it. With Udi's you can have that sandwich you are craving. I can relate to your post seeing that I am gluten-free and work at a University here in my town. I agree there is stress when you know students are evaluating your performance. I think all of the faculty and administrators know that when students are doing poorly they most likely will give a bad evaluation regardless. I think that you should focus on feeling better and not the "what if's". My dad always tells me that is anticipatory anxiety - and sometimes you just have to imagine a stop sign and tell yourself that the thought isn't positive or beneficial to your overall wellbeing. Start tuning in to all of the things in this world that you CAN do or CAN have instead of what is going wrong. I know it's hard because beleive me my stomach is on the verge of an ER visit right now because I am having alot of pain. Still I think to myself...."yep it sucks that I am intolerant to about every food imagineable, but there are two little children who are counting on their mom giving it 100% to feel better". The other day my daughter comes home asking if we can give her old clothes that do not fit to a girl she knew that had been wearing the same clothes for 3 days. It's in moments like that when I am humbled and realize that there are so many people going through so much more than me at any given moment. It's OK to feel bad about what we are dealing with....but we have to just accept and move forward. You may not think your students understand, but I bet they do. We have had a number of young traditional students who have dies within the past year for many different reasons....cancer, chron's complications, accidents....etc. Those students would understand your troubles. If you think about it many of our students have friends/family/loved ones dealing with different illnesses and disabilities, so I am sure they would show sympathy. Just communicate to them well that their grades may not be posted as fast as they would like - and you may not be able to respond to e-mails ASAP....but that you are still doing everything you can to make sure you take care of their coursework/evaluation.
Just my two cents....I do empathize with your situation and am myself upset that I cannot just run somewhere and pick something up like I used too. I find that a staple for me is Wendy's Grilled Chicken....plain no bun and a plain baked potatoe. I literally go there 3-5 times during the work week and since I am regular...they all know my situation and work to the best of their ability to prevent any cross-contam. They are really the only fast food option I have since we really only have BK, McD's, Wendy's and Taco Bell.
Unfortunately you cannot gall a GI doc until you are an established patient. Until 5/18 I do not have a GI doc technically - so he would not be able to advise me on the gluten challenge. I am sure once he sees me as a patient for the first time he will advise me as to what I should try. I truly feel like my stomach has stopped digesting. I have had so much pain today - I know last nights dinner is still not digesting. Gas and pressure is so bad
Morning is the worst for me. I do not know if it ties into what you are dealing with at all - but I absolutely dread mornings and how my tummy will react. It definitely gets better throughout the day but I feel nauseus and and dizzy before and sometimes after I eat in the AM as well.
I tried to do a "multi-quote" but couldn't figure it out. Sorry - I was trying to respond to all of the helpful responses I got. The description that was given about the digestive system was very helpful in understanding how people could have an immediate reaction. Thanks!
Ravenwood I can and have gone to urgent care too many times to count. They always end up doing tummy xrays which do no good. Also, I have been to the ER at least once a month for sever tummy pain if I can't manage it at all at home (if it gets to the sharp pains). I have basically been given a prescription for Vicodin and a prescription for Vicodin and sent on my way until my Gastro appointment. Oh yeah....the GP doesn't beleive in Allergies or the Celiac really. My Allergist forwarded him the results showing allergies to about every food and the GP says do not stop eating any of them. I am told by the GP to eat a regular diet, take extra fiber, and try the Bentyl or Amitzia (sp) he prescribed for me for IBS.
The GP has given me pain meds so that I do not have to have the ER visits if the pain gets too bad before the Gastro appointment. Other than that his hands are tied and he is waiting for the Gastro. They feel they have done a full workup including a tummy ultrasound and xrays - and I had a cat scan of the tummy in the ER. My bloodwork "celiac panel" in the past was negative. They have never checked vitamin levels. I have been told my iron was "slightly low" (like one point under what the low level is), and know when I was pregnant with my son the doctor threatened IV iron if it didn't improve (but who doesn't have low iron while pregnant). Other labwork has revealed slightly elevated liver enzymes - but I was told that it was only one of two liver enzymes so they are not worried about that....whatever that means. Basically they say you have IBS....sorry....you have to deal with pain episodes and severe bloating
Sorry for the novel. I am really trying to not break down over all of this. I do appreciate your responses through this. The 18th can't come soon enough!
I did call the gastro today but they cannot guide me as to what to do now since it will be my first appointment with them on 5/18.Technically they cannot advise until 5/18
I only knew to go back on gluten from these posts. This site has been very helpful. I will keep it up as long as I can but it seems like as the days progress my symptoms get worse/stronger. I have less than a week until the appointment now but feel like if I can go in all glutened I may have a fighting chance of accurate diagnosis.
If it stilllll urns out that they are clueless I will just go gluten-free anyhow. Thank you for the support! I am sorry to hear the gluten-free/not really gluten-free crust got you. It is not fun dealing with the consequences of that Hope u feel better soon!
Thanks for your input Allison. Your timeline is correct. I have been eating gluten for 3 weeks now - and appointment is on 5/18. Prior to that was gluten-free for at least 5-6 months...maybe even back to October/Novemberish of last year so it could be closer to 7 months gluten-free.
I definitely believe this is a possibility. I was always the smallest child at school, always went to the bathroom maybe 5 or more times a day and certainly every time I ate, was always catching every illness (mono at 15, hypoglycemia and severe allergies diagnosed at 17) - but it all seemed to go away for the most part until a few months after my son was born (28 years old). At that point my stomach was never the same and I have struggled since. Looking back I do remember many food related issues as a child that they never looked into. My family just brushed it off as me being "picky". I would refuse food, hide food because I didn't want to eat it, and would wake up at night in childhood screaming with terrible nightmares. I can't help now but to think that it is all somehow related. That maybe I was refusing food because my body knew it was making me sick but I didn't know how to express it being young. I remember the doctors telling my doctors I was anorexic when I had mono at 15, but I ate more than anyone in my family. I was always front row center in every school picture because of my size. My twenties seemed to be the "honeymoon phase" though. I do not remember having any food related issues or tummy upsets. I of course stayed under 100 lbs, but I know I wasn't in any pain and did not have the major celiac symptoms. I do think it went a bit silent and then re-occured when my son was born - if that is even possible.
Minimum of 3 months?? Are you serious? I thought a good 6 - 8 weeks of daily consumption would be enough to test. This is so frustrating! I am thinking I will go gluten-free again to get out of pain/fog - and just have to see what else the doc can offer me as far as diagnosis.
Why is it that people have symptoms instantly ( I see posts on here ) if it takes 3 months for gluten to build up/do enough harm for it to show up in bloodwork? You would think that people would have delayed reactions as well if it truly takes this long to cause blood tests to be skewed by it (of course I am not a scientist...just questioning stuff again).
I have a Gastro appointment 5/18 with a local gastro that I have been waiting to see for 3 months. My hopes are that he can do Celiac testing and get me a firm diagnosis so I know what is going on with my tummy.
I was gluten-free for about 5/6 months up until 3 weeks ago when I went back on gluten awaiting this appointment. I knew they couldn't test if I wasn't eating it. I was fairly OK for maybe 3-5 days into the challenge but have felt miserable since. The brain fog has really only kicked in the last 4 days or so and I really just can't hold a clear thought very well. I also get very bad tummy pain a while after I eat gluten - which is every day now. I had pizza last night and have been in terrible pain since - today being very bad. My symptoms have been the fog/fatigue and pain/constipation. Both of these are on the extreme side. Even though I go to bed at 10:30 and get up at 6:30/7:00 I feel exhausted. I am in a fog all day not able to remember things. And the tummy pain/indigestion is about unbearable. I already take Nexium which is not helping at all. I just feel like that pizza is sitting undigested very high up in my stomach It's a terrible pressure feeling - and I ate it at like 6 PM last night! Grrrr.
Would you all continue to do the challenge even if it made very sick? Just to get diagnosis? I really want to know my status so I can be sure to check my 4 year old and 11 year old if they could have a predisposition as well. I want to save them the pain I have had over the years. I would also rather it all be done through my GI doc/insurance instead of paying out of pocket for something like enterolab. Being a single mom to two - cost is an issue and my insurance is very good. If they can send it through insurance I would be much better off.