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
Your description describes my gluten reaction perfectly except I am usually toilet bound for 3 to 5 hours. Is there any chance you could be getting gluten CC anywhere? Have you read the Newbie 101 thread at the top of the Coping section? It could clue you in on ways you may be getting CC. It doesn't sound like you have been gluten free for very long and it can take some time to heal and get used to all the little things we have to do to keep us safe.
Your friend needs to see a GI ASAP. If money is an issue for more testing most hospitals will work with her for payment or in some circumstances may even cover the cost of testing in part or completely. 30 lbs in a month is a lot and she could have something very serious or even fatal. I hope she can get some help soon.
I have DH and I did have to avoid iodine for a while after I went gluten free. I didn't have to worry about naturally occuring iodine in foods I just dropped iodized salt and made sure any supplement didn't contain iodine. (Some may have to be that extreme but I didn't). I also didn't worry about salt added to stuff that was prepared and even potato chips didn't have an adverse effect. I think if companies used iodized salt then I would have never healed DH wise. Perhaps contact the FDA for their regs on the salt added to prepared foods. They would be able to tell you for sure if iodized salt was commonly used or needs to be noted on the label.
You need protein and carbs. I do hope you are not eating just tuna everyday for a protein source. You don't want tuna more than a couple times a week. Add in some eggs, chicken, beef or pork. If you are not much of a meat eater then go with beans and rice, nuts and nut butters. Add some freshly crushed hemp seeds to your salads. A good source of protein that is easy to digest. You can get a gluten-free Hemp milk. I liked the chocolate when I was trying to gain.
Quinona is naturally gluten free. I wouldn't worry about it saying gluten-free. There is a pasta with that and corn however I don't remember the name of it off hand.
There are quite a few gluten free pastas. You may want to try some of the cooked veggies mixed with one and smothered in olive oil or butter. On busy days I will boil some frozen veggies and garbanzo beans (canned, rinsed and drained) and at the end of the cook I throw in Thai Kitchen skinny rice noodles then smother it with butter and parmesan cheese. Plenty of calories and protein and you could use olive oil if you are avoiding dairy.
I am sure others will have more ideas for you.
Being strictly gluten free will take care of the rash although it will take some time to heal and for the antibodies to leave the skin. Even the tiniest amount of CC will reactivate the rash.
If you do choose to use Dapsone please make sure your doctor runs a liver panel first and that the panel is rerun frequently while you are on it as that med is quite toxic. People with celiac can have liver impact from the disease so it is vital that you make sure your liver hasn't already been impacted.
You are very early in the healing process and it is going to take some time to recover. It is quite possible to have a normal CBC on testing and still be celiac. What matters is your postive Celiac panel results. I know it is hard to be patient with your recovery but we really don't have a choice. Do you best to make sure you are doing all you need to prevent CC and if you haven't already do read the Newbie 101 thread at the top of the Coping section. Also make sure your little one gets screened regularly as Celiac is strongly genetic.
Welcome to the board. Glad to hear you are already starting to feel better. I know folks with DH often have false negative tests and am starting to wonder if maybe folks with ataxia do also. Not something that has been researched at this point though as far as I know.
You have some pretty savvy neuros there, congrats on that as mine was clueless and told me my lesions meant nothing and I just wanted to be sick.
Have they tested your B12 levels? If they have what range did they use? It used to be considered that 250 or so was the low cut off but that has changed to 500 in the last few years. Sublingual B12 may be helpful for you if your levels are dropping or low. It can be helpful to look at a record of the levels since levels can be dropping and still register at normal after the body stops being able to utilize it.
Be VERY strict with the diet. The Newbie 101 thread at the top of the coping section can be helpful in showing us all we need to do to keep safe.
I hope you recover fully soon but it can take some time. I also hope your son is getting better at keeping himself safe as with Type 1 is is crucial that he do all he can to keep both under complete control.
Can you get your ped to write a 'script' for the 504 plan that stresses the need for gluten avoidance? I could be wrong but if your doctor specifies that your child needs to be kept safe from CC the school may comply with the demand. You could also try getting a second opinion from a different ped GI.
So sorry you are going through this. Have you been eating those sausages for a while? If you have maybe, hopefully, it isn't oat CC and was the sausages that were causeing the issues. That would make things much easier for you so I am keeping my fingers crossed for you on that one. I use Jones sausages which are labeled gluten free. Don't know if you can find them where you are but when you are feeling better you may want to look for those instead.
I hope this resolves for you soon.
I agree with the previous poster that if a celiac panel hasn't been run it should be. If it is or was run and was positive then there are a few things that you should evaluate.
Is there any new med or supplement you may be taking that may not be gluten free? Are you eating any gluten-free oats? Some of us don't tolerate them. How about any of the beers that have 'gluten removed'? Pets that eat non gluten free foods? A significant other that isn't gluten free that could be CCing you with kisses?
I hope you can get down to the cause of this soon.
Have you tried stopping the oatmeal? Some of us will react to it. For me it doesn't cause quite the same symptoms that wheat does but it does make me feel tired and just off with some looser movements but not the severe D and cramping. If you really feel a need for a hot cereal maybe try Cream of Buckwheat or something else along those lines.
to you all and anyone who has to put up with stuff like this. People can be such jerks it is hard not to wish celiac on them at some point in their lives.
I'm sorry you are going through this. Are you on any other meds that might have C as a complication? Have you dropped dairy and soy from your diet? It may not be the case for you but for me any soy other than lecithin will bind me up for days. Are you still getting physical therapy? The treatments like bio-feedback training can be helpful for some.
Your OB/Gyn should be able to tell you whether it could be related to childbearing.
Did you have neuro symptoms as part of celiac? If that is the case this may ease after a while longer as it can take a very long time for nervous system impact to heal.
I probably haven't been very helpful but hope you get some relief soon.
Welcome to the board. Do take the previous posters advice and read the newbie thread. It should be very helpful. Being gluten free when you are celiac involves a lot more than just reading labels or ordering a steak and potato at a restaurant. How our food is prepared is very important as even a very small amount of cross contamination will have the effect you are experiencing. It does get easier in time. Hang in there and ask any questions you need to ask. I hope you are feeling much better soon.