defeatwheat

Have you noticed any link to dairy consumption with the symptoms? I was very slow to go dairy free but after I had switched gastro doctors and he said sorry there is nothing more I can do than what you are doing and the meds you are using and then said a lot of times dairy is a problem for people with Celiac. I tried dairy free and have had good results. Not that I don't have other issues from time to time because I have IBS as well but certainly improvement has taken place. I wouldn't do anything too drastic right away because it takes me longer than a month to feel right after even a drop of gluten accidentally or cross contamination. Good luck. It's a journey and people on this site can provide assistance better than most doctors. Yes I'm jaded, it took the doctors way too long to find Celiac and they didn]t find it till I told them to check for it.

If you are diagnosed with Celiac you will want to take vitamins and supplements. Depending on your insurance situation you may want a full blood panel taken to see where your vitamin levels are. If you do have Celiac your vitamin levels will be low so it is kind of a given but your doctors may be able to assist further if they know how bad it is? I was to the point my bone density was affected and even had to take calcium for a while which oddly was hard because I thought that was for little old ladies.

If you don't get much response on this topic, you can always start another one. Sometimes the label is everything.

     Definitely get an IGA/TTG test. That's the blood test for Celiac. I don't know that everything you have explained may be Celiac, but the fatigue, immune system problems and possibly the skin issues as well. Healing after stopping the diet will take a while. I always felt hungry because I was not absorbing nutrients. Upon getting on the diet I lost 20 pounds quickly. In part due to the learning of the diet and some temptations being removed.

     As far as whether you eat wheat between now and the test that is not easy to even give an option on but I will say when I had the endoscopy my wife fed me pizza while I was coming out of anesthesia. After I got my whits about me I wondered if that was a good idea. Did it affect me? I'm sure it did but I was so used to the problems that I did not even pick up on it. That was the last gluten based pizza I ever had so no regrets. I don't know how long it takes for the gluten in your system to go completely out. Good luck! This site is helpful.

I had some improvement almost immediately but other things took some time. Lots of ups and downs. It depends how bad off you were to start and how quickly you can adapt to the new diet. It's hard to look back for me - but it will get better for you. It takes some time to recover and heal. It took some time for my body to get back to itself. Its probably in the months for some symptoms to get better. (So if you are following the diet and still not there yet, that is normal) For me I am still not where I want to be but compared to where I was - almost hospitalized- I'm doing great. Hang in there! The first year is probably the hardest. Good luck!

Welcome to the group. You'll get some nice advice here. I think your decision will have less impact than some who say have been gluten free for a long period of time and then are told to go back on it and be tested. I doubt your results would be affected either way but I'm no expert on that so I will digress and leave that advice to someone more knowledgeable about this area. However how are you going to be tested? That will get you some better suggestions. Blood test? GI scope?

Good luck in your journey!

Do you have the specific tests ran and the numbers behind them? Sometimes a "negative" could be headed in the direction of a positive. Some people can give up gluten because they feel better and others want to know for sure. For me I think I needed to know it wasn't optional. I had a blood test as well as an endoscopy. I believe the blood test is enough however. The test I received is an IGA/TTG. I don't know the interpretation of the numbers but I believe it is on this site. With so much family history it is likely the culprit whether it shows that way or not. Best wishes to you and your family.

   I hear you. After an ackward attempt or two, I don't go to potlucks and food events at work. Luckily I have boss who is understanding and fights my cause for me. Food is my enemy as well and if I could live without it I think I would.  No wonder there are some issues health issues in our country, all social events revolve around food. I didn't even realize it before I had Celiac. Being on this site helps me realize my reactions and fears are normal. Good luck to you!

 Sorry, some of them I do not understand. I would find out for sure if you have Celiac via a blood test. IGA/TTG is the test I was diagnosed with. I had half of it years prior but not the other half so there were extra years of misery. I don't understand the others reasons why people do a gluten free diet other than Celiac, but it  would find out for sure if you have it. Knowledge is power, so find out all you can medically. There are setbacks even if you have Celiac and are following the diet. I hope I am at the end of one of them. When you are first diagnosed, one is so delicate and about anything can set ones stomach off. It's really a marathon. Hang in there, follow this forum and make posts. It is a great resource. Doctor's don't know all I wish they did but there are many knowledgeable people on this forum.

  The short answer is yes. Have you officially been diagnosed with Celiac? There are a lot of stomach issues out there. Unfortunately I have a lot of them. Some of them I understand, some I

      Coming from someone who had the blood test and the biopsy, I wish I had just went with the blood test. My dad and uncle who are twins have Celiac, the blood test was positive, etc etc. I know there are others who have different directives or opinions on this. I'm just offering my experience. If I hadn't had a tooth chipped while unconscious and not scared my spouse because I was not waking up normally because I had undiagnosed sleep apnea, then my experience may have been different.

      Some things that you may not be able eat  at first may be do-able later. I am gluten free for over eight years and dairy free probably for about a year. Dairy was hard to add, but my health improved. If not medically necessary for me I would eat just about anything. Best wishes to you in this journey.  

     I had a major birthday a couple weeks ago. After not having had soy ice cream in quite some time and not remembering why I requested ice cream with gluten free cones. I hadn't had a cone in over eight years so I was in heaven and ate 6 of the 8 servings in the container during the day. I woke up not feeling so well and knew something amiss. I'll leave out the details but after reading the label and seeing how much of the daily fiber was in each serving I think about 12% and times that out by the six servings....... I then knew it was the fiber not anything else I had eaten. Now two weeks and three days later I hope to be on the better side of this. Taking Immodium AD after set things the other way and has made a tough go of it. Best of luck to you. If anyone has a magic formula for resetting the stomach please advise. (If I had been more moderate in what I ate, I think I would have been fine.)

Hi...I read posts on here regularly, but I haven't been writing on here in a while because I have been doing really great after such a long struggle.  I was diagnosed Celiac by biopsy in Fall of 2011...really sick.  Well, I have been spending the past almost 2 years healing...ups & downs...but so thankful to be heading up more than down.

 

I finally felt well enough to start looking for part time work(my hubby works & we have 4 school age kiddos).  Our medical bills are so crazy from the period of time I was so sick, & I want/need to help out financially. 

 

I took a wonderful job a couple weeks ago that I begin tomorrow & my symptoms have absolutely returned.  I am so frustrated.  In my head, I'm sure this is completely anxiety kicking in...something I havent dealt much with but seems to be magnified in this new Celiac body of mine.  I've lost 7lbs in the past week, I get sick every time I eat, mornings are now my worst time, & I think I am panicking because I don't want to end up in the hospital again.  

 

I just need some encouragement & advice from some of you that have lived with Celiac Disease longer than me.  Is there anything you take to calm down your insides?  Is anxiety another angle of Celiac Disease that I have to get a grip on...if so, how do you deal? 

 

Sometimes I feel like I have conquered living with Celiac Disease...other times I feel like the disease is kicking my butt!

 

Thanks for listening... 

Hi...I read posts on here regularly, but I haven't been writing on here in a while because I have been doing really great after such a long struggle.  I was diagnosed Celiac by biopsy in Fall of 2011...really sick.  Well, I have been spending the past almost 2 years healing...ups & downs...but so thankful to be heading up more than down.

 

I finally felt well enough to start looking for part time work(my hubby works & we have 4 school age kiddos).  Our medical bills are so crazy from the period of time I was so sick, & I want/need to help out financially. 

 

I took a wonderful job a couple weeks ago that I begin tomorrow & my symptoms have absolutely returned.  I am so frustrated.  In my head, I'm sure this is completely anxiety kicking in...something I havent dealt much with but seems to be magnified in this new Celiac body of mine.  I've lost 7lbs in the past week, I get sick every time I eat, mornings are now my worst time, & I think I am panicking because I don't want to end up in the hospital again.  

 

I just need some encouragement & advice from some of you that have lived with Celiac Disease longer than me.  Is there anything you take to calm down your insides?  Is anxiety another angle of Celiac Disease that I have to get a grip on...if so, how do you deal? 

 

Sometimes I feel like I have conquered living with Celiac Disease...other times I feel like the disease is kicking my butt!

 

Thanks for listening... 

Stress definitely does not help my symptoms. As mentioned walks seems to help. I try to leave myself some down time each day if possible, but if your a mom that may be more difficult. Try to let everyone know what you need from them and that if you are having a rough day that they will need to step up their game and be on their best behavior for the day and that you will have a little less to offer. When my kids get that dad is not doing so well they tend to behave better, but if not they know dad has a little shorter fuse when he is not feeling well. I totally get what you mean about thinking you have Celiac under control and then realizing it is in control at the moment. Anything I can do to take my mind off the symptoms or focus on the soul is helpful to me. Best wishes to you!

Hello everyone, 

 

I'm new here and have been reading through the forums for hours now, it is a pleasure to see so many knowledgable people in one place and to feel as though this might not all just be "in my head" as so many people have told me. 

 

I don't have a celiac diagnosis yet but I strongly suspect that I have an issue with gluten as this is the only thing I have found that fits all of the many symptoms that I have: 

 

- Constant stomach ache, often particularly bad after eating 

- Nausea (to the extent that by dinner time I sometimes can't face putting food in my body) 

- An almost constant dull headache (that sometimes progresses to a migraine) 

- Brain fog, brain fog, brain fog. This one is the worst for me - I feel like I can't think at all, I can't order my thoughts or follow instructions/remember information like I used to

- Constant exhaustion (I have started having to sleep for up to 2 hours during the day just to get through until I can go back to bed, even when I have slept for a solid 8 hours the night before) 

- Absolutely NO energy (I can't make it through a gym class anymore) 

- Constipation for three weeks at a time, followed by diahorrea, and then back to no bowel movements 

- Sinus infections

- Puffy face

- Red blotchy cheeks and dry, spotty skin

- Often swollen fingers with a rash (though this one comes and goes?)

- Inability to regulate body temperature (when it's a bit warm I am sweating and when it is a bit cold I am shivering and absolutely freezing)

- Easily out of breath (even after walking up the stairs which is unusual for me as I used to cycle daily and am a relatively fit person up until now) 

- Achey achey body - especially my lower back and my legs 

- Dizziness and fainting on two recent occasions

 

Does that sound familiar to people here? 

 

These symptoms have been mild for a long time now but about six weeks ago I had an inner ear infection and fainted. Since then they have got worse with each passing day. 

 

I got blood tests done three days ago which could take up to four weeks (!) to come back (i'm in the UK)... however, I'm nervous as I know blood work can be inconclusive/give false negatives and I feel like I can't go on like this much longer. I just can't take feeling this bad anymore. So my question is - is it worth waiting on the blood results before I change my diet or should I just take the gluten free plunge now and see if it makes a difference? I'm wary of starting because I believe they need to do a biopsy of the small intestine to give a diagnosis if the blood work is positive and I know it's necessary to have been eating gluten before that... however, that could be 8 weeks or more away from now and that is only if I get a diagnosis from the blood work!

 

Feeling quite confused about what best to do. Any advice would be so greatly appreciated as I feel quite alone in this just now. (I have a family who are quick to write everything i describe off to "stress" even though I know I'm not feeling stressed or unhappy at the moment at all - everything is good right now about from my health!). 

 

Thanks, Sarah x

      Waiting four weeks for a blood test result is brutal. Sorry. Until I read twice I was going to say the blood test is quite reliable I would go with those results thinking you would have them in 2-3 days. See what kind of responses you get. I don't think the scope would change that much in 8 weeks. The blood test would change more quickly I  think, but that has been done. If the blood test comes back positive I personally don't think you need the scope. (Coming from one to had both but wishes I would have just taken the blood test result since they were both positive it was just a waste of time and money.)

      I can certainly relate to the fatigue and sinus infections. Those symptoms will improve if you have Celiac and follow the diet. My suggestion is to weigh your feedback and any info you can find and go from there. Best wishes.   

    I was offering my experience not advice. True I am a stranger but in this forum you have a community of knowledgeable people who have experienced it and are living it. Follow your heart and it will lead you in the right direction. My experience is that the professionals have extremely limited knowledge or understanding of Celiac. I have put out a plea to anyone in the Celiac network in my state more than once if they have a doctor who understands it to let me know and I would go anywhere in the state. I received no response. Hopefully your experience with doctors is better than mine has been. Best luck to you and your daughter. This site is helpful. For me the phobia of getting contaminated at public events is very real and being on this site has helped me realize that I am not alone in that.

I was hoping to see some answers to your post regarding energy. I have energy issues. I know exactly what you mean by the stars aligning and having energy. I think I would do anything to keep it that way, I just don't know what causes the low energy. I'm thinking it is part of Celiac but I can't help but hope there is a better answer than that.

     Is there anyone who has found something that will work to help anxiety without irritating the system? I only have one herb that helps and that is St Johns Wort. All other antidepressants just start to work when they start to make me sick. Some times during a good stretch I look back and go wow, I was really paranoid, stressed or anxious for no reason. By nature I am more outgoing than I act and sometimes I just wonder if I am missing out on a higher quality of life due to ignorance. My gastrointerologists say they do not understand medicines enough to know what will work and of course doctors who understand medicines enough to "help" me do not understand the workings of Celiac. Any help is greatly appreciated!

     IGA/TTG is the test you are looking for. I got tested for half of it not the whole thing and ended up taking years more to get diagnosed. You need to be on a wheat based diet when you have the test. I had a biopsy and had pizza when coming out of anesthesia. It was the last wheat based pizza I ever ate. I'm feeling much better once diagnosed and following the diet. Celiac is genetic so there is a fair chance it is the culprit. Don't quote me but I think your chances are around 1/5 of testing positive? Anyway my dad had Celiac and so far I am the only child to have it out of five although I think all my siblings have stomach issues of some kind.

My daughter is gluten intolerant, she has been tested and is NOT celiac.  She has really done a ton of research and we know what she can eat and what makes her ill (gluten and lactose).  My concern is that she seems to be so anxious over everything involved with eating now.  She is afraid to eat salt, fat, too many calories, too few calories, etc.  She has let it stop her from doing things socially with her friends because she is afraid of what food will be served and she doesn't want to be singled out for not eating things.  She is continuing to lose weight and she definitely can't stand to lose any pounds.  Help, have any of you had your child develop intense anxiety over their gluten intolerance?

No, but I have immense anxiety over not eating things at social events. For the most part I just do not go. I do not tell anyone except family and work - that's a tough one to hide so work knows. I don't suggest this approach but after longer than eight years that is where I am still at. I lost twenty pounds rather rapidly when first diagnosed. I think that is part of the craze with those who go gluten free as a form of diet. It takes a while to figure out what one can eat and really is a constant effort. Ill be honest, a constant effort for my wife. Without her care who knows where I would be? The short answer is your daughters reaction and weight loss are completely normal in my opinion. Best wishes.

     Corn on the cob is a very hard thing to digest. I don't eat corn on the cob even though I eat every other form of corn. As for gluten free oats you may not be accustomed to the amount of fiber in them. Balancing fiber is a very difficult thing for me. I've heard of avoiding all grain, in theory I don't think it is a good idea and I really don't want to do it but sometimes after eating various flours I question if it is actually tough to digest but I think it goes back to the fiber for me.

    Have you had an IGA/TTG blood test? This is the test for Celiac. When they looked inside me they said all was well until the biopsy results came back and then it was clearly Celiac. The results of this blood test can give an indicator if you are headed in the direction of Celiac. I believe some result numbers are posted on this site and what they mean. Doctors don't give this test enough, you will need to request it by name.

    There are other conditions that make gluten hard to process. I don't know much about those but I do know they exist. Good luck. I have found if something makes me sick and I can figure out what it is I stop it. The problem is it is very difficult to figure out what is causing the problem. I'm still at it after nine years.

       I have followed the gluten free diet strictly for about nine years after being diagnosed with Celiac and have been dairy free for about a year. I still get bouts 2-4 times a year where I bloat up, get constipated sometimes to a scary extreme and am exhausted and feel horrible. My gastro doctor has said every test that can be ran has been ran. I take Chlord to help with stomach spasms and Omeprozol to help with acid reflux. I stay away from things like tomatoes, corn, popcorn and nuts - anything that I think has been an issue I eliminate. I think it must be food related because nothing has shown on CT scans or x-rays or even a colonoscopy. Any ideas on medicine or diet?

      Also when my stomach is out of whack it affects me psychologically. I have tried several antidepressants/anxiety medicines but all seem to irritate my system. I take a herbal supplement St Johns Worts, that helps some.