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 didn't want my first post to be too long, so I will clarify a few things now.
She absolutely will NOT be eating on the mandatory food plan. She has already been told she can exempt out of it with a letter from her doctor.
Consequently she WILL be in an apartment with a kitchen. It is just a matter of whether or not she can be on campus with a roommate to bring costs down and not have to be in a year-long lease.
As of right now, she is understandably pretty unwilling to share a kitchen with gluten. She is highly, highly sensitive to any form of cross contamination. She currently is on SCD and we make everything from scratch. The only processed foods she eats is coconut oil, olive oil, tomato juice, dried spices, honey, and a couple teas. We have called every company of any processed item that is in our house to make sure the company guarantees there is no risk of cross contamination. We have verified that every item she uses on her body is gluten-free. We research any medicine she uses and compound it if necessary. She is SERIOUSLY gluten free.
She is going in with a state scholarship that pays 100% tuition and it is dependent on keeping her grades up. She is also in the running for a very large scholarship at each school as a National Merit Semifinalist. If she gets that, she will also have to keep her GPA up to keep her scholarship. Additionally, she plans on going to medical school and cannot afford to have her grades drop because of that. So, she has multiple reasons why she CANNOT get sick because of mistakes on the part of other people. I understand the thought that she would just have to clean really well, but considering she will already have to take all the time to cook every single meal from scratch, she really doesn't want the added burden of cleaning up after all her roommates. Right now she can't even pick up a raw apple and eat it. She has a lot of labor involved just in feeding herself.
People - even well-meaning people - just don't think sometimes. All it takes is one time for them to "share" off her cooked food or use one of her cutting boards or ...whatever...
I know it will be nearly impossible to find a gluten-free roommate. I just thought this would be the best place to ask.
I don't really know where to put this, so I hope it is okay that I am crossposting it.
This may be a weird message, but my celiac daughter will be heading off to college next fall. She is already accepted at USF (Tampa) and UCF (Orlando). UCF has told her that they can give her a single room with a kitchen, while USF says they do not have that available. The best they have is a double (as of right now, I don't know if they will be able to work something out.)
She would have to get her own apartment for USF (very, very pricey and not convenient to be off campus) and the single room at UCF is a year lease (also very pricey.) She would prefer to have a roommate on campus at either school, but USF is her first choice school.
Does anyone have a daughter planning to go to one of these universities next fall? We figure it never hurts to ask!
My dd is a very sensitive celiac and cannot risk cross contamination issues at all.
I do not trust processed food anymore. We kept getting glutened by everything that wasn't supposed to have gluten in it. We are sensitive enough that we cannot tolerate any level of cross contamination - even just from sharing lines. We kept cutting out more and more processed items until we finally decided to do the Specific Carbohydrate Diet for healing. The only processed foods we eat right now are coconut oil, canned pineapple, apple cider, Welch's all natural grape juice, and almond butter. I have confirmed with the companies that my almond butter and coconut oil are safe. I have not confirmed the other items, but they have not caused us a problem (that I am currently aware of.)
So, I would advise you to make your own almond milk. Then you know exactly what is in your milk. We tried to use a processed almond milk on Christmas Eve for an eggnog substitute. It was delicious and then made us sick as dogs for the next week. I never get GI symptoms from a glutening, but I was vomiting the whole next day.
The sneakiest and worst offenders for us have been:
1. Products that are labeled gluten-free, but are not either because of the PPM they allow or because of cross contamination.
2. Any freakin' item that has been run on the same line as a gluten product for processing or packaging. One organic juice company I was talking to was explaining that they do wash their lines well in between runs and they can really wash because they are liquid runs. She said dry run processing usually only blows off the lines, rather than a thorough wet wash between runs. Ug.
We are hyper-sensitive to even the smallest amounts of gluten and have been contaminated way too much!
Are you eating many foods with food additives like artificial colorings, artificial flavorings, BHT, BHA, TBHQ, aspartame, MSG, etc? These chemicals are very bad for everyone, but they are especially bad for people with damaged intestines/immune systems. All of us in my family react to these chemicals, but two of my dc REALLY react. It was actually what we eliminated first before we figured out the gluten connection. After my 16 yo dd had been gluten free for awhile, she had to take a medication that had yellow dye in it. About 6 days into the med, she was up all night because she couldn't sleep. These chemicals wreak havoc on my dc and sleeplessness is high on that list. Be aware that even if you read labels, these are often hidden in processed foods (the packaging is sprayed or they don't have to list ingredients within other ingredients - like TBHQ within the oil used.)
It is highly likely that your sleep med has some of these chemicals.
It could also be a B12 deficiency.
Although you need to figure out what is CAUSING the problem, you may want to soak with Epsom Salts every night before bed. The sulfates will help your body detoxify and the magnesium is good for you and will help you relax. You can soak in a tub or just do a warm foot soak.
I hope you figure it out.
Disclaimer: we are still pretty new to gluten free (3 1/2 mths), but we have learned a lot very quickly and there are six of us I am learning from! We have been chemical free for 2 1/2 years (mostly so for most of that time when I thought reading labels was enough and strictly so when I learned about hidden ingredients.)
I second Ursa's suggestions for Enterolab and going gluten free right away! You could just go gluten free, but the test results will help you know for sure. While you could theoretically get a false negative and still try going gluten free, a positive result will really help you stick with the diet - especially if your dc is super sensitive to cross contamination. Without the test results, you might end up thinking gluten free isn't working, when really it might be that you have more to do. KWIM? Also - go with the full panel and make sure you test casein, too. The casein test will let you know whether you are dealing with a casein issue or a lactose issue if you do have dairy problems down the line. The nice thing about Enterolab is if you don't test everything initially, they keep the sample for about 6 months. If you decided to do additional tests within that time period, you don't have to send another sample in. We are now having them check soy on our two boys from the samples we sent in before.
Move quickly. I wish I had known what to suspect with my 2 yo when he first started having problems. He went from being the world's happiest, friendliest, most adaptable, fun, active toddler to an almost nonfunctional toddler who didn't play at all, cried at every transition, only ate four things, and couldn't have strangers talk to him, look at him, or even talk about him without screaming. It happened very, very quickly. He was diagnosed with sensory processing disorder and is doing much, much, much better since going on Prevacid for his late-onset reflux and going gluten/dairy free 3 months ago (and soy now, too). It breaks my heart to think that I could have spared him the downward spiral if I had only known. At least we figured it out early and I believe he will fully recover.
My 16 yo dd has not been diagnosed with PCOS because the gyn. didn't want to run all the tests for it quite yet because my dd is so young and the doctor said the tests are expensive. I had already suspected PCOS because of her symptoms, but then I figured out that she was gluten intolerant because the symptoms matched even more so (many are the same.)
PCOS is a syndrome and no one knows for sure what causes it, although the insulin resistance is the strongest suspect. But the question is - what causes the insulin resistance?
My dd was tested through Enterolab, but was then also tested by a gastroenterologist through bloodwork and gastroscopy. She is confirmed celiac. Since she went gluten free 3 months ago, many (many!) of her symptoms completely resolved and many more are improved (including restarting her menstrual cycle after two years without one.) She also gained weight - very rapidly. That hasn't changed yet and after her next visit with her GI, I will probably get her into an endocrinologist just to make sure there isn't something else going on.
I firmly believe the celiac is at the root of all the problems she has experienced. We were essentially poisoning her for 16 years. Fortunately, she is young and I believe we can turn the damage around. It is just a matter of figuring out everything that needs fixed (like her B12 deficiency which was found through bloodwork - we need to do more investigative work.)
I am not an expert - so I can only repeat to you what I have read after a lot of research. From everything I have read, yes, multiple food sensitivities can indicate leaky gut - particularly if you cut out the foods that bother you and then develop new sensitivities to the foods you are consuming most. The idea is that the permeable membrane of leaky gut is allowing food particles that are too large to cross over into the bloodstream. The body then sees these too-large particles as enemies and attacks them. This results in the sensitivity. There does seem to be hope that the sensitivities are reversible. I am not talking about celiac disease here, because with celiac the immune response happens right in the gut, not after too-large particles seep out of the gut. I do personally believe that a lot of celiacs have damaged their intestines and have a permeable membrane and have both the gut response inside the intestines AND the response outside the intestines - particularly the "opiate effect", but that is a side issue. There seems to be hope that if you heal the gut, you may be able to tolerate some of those foods again.
I sure wish all of this was better understood and it was easier to diagnose. It seems like the gut is so central to all other health, which make sense, but it doesn't seem like it is very well understood within the medical community, even among the experts.
I have not been confirmed gluten intolerant yet, although I finally ordered the test and will be taking it soon.
Here's my crazy story:
I have never suffered from depression. I had some depressive type of episodes in my teens and very early twenties, but nothing for a long, long, long time.
By nature of all four of my dc going gluten free a few months ago, I did too. I have found that if I get even the tiniest amount of cross contamination, I am a raving lunatic. Seriously. I either have a fit of rage and/or mind numbing depression! Depression like I never knew existed! I have crying fits and feel like I can't cope and my life is too overwhelming. It is the weirdest and most horrible experience. Of course, because we all eat the same for the most part, when I get CCed, my dc and dh do too. So while my family is suffering side-effects (which includes major behavioral issues in my 4 yo and major sensory issues in my 2 yo), I am not of a rational mind-set to cope with it, so I end up crying myself to sleep the night I get glutened. It helps if I can recognize that I was glutened, because then I know it is just a reaction that will pass soon. It is the weirdest sensation - knowing rationally that I am being totally irrational, but not being able to control those irrational feelings (even if I don't act on them.)
My dh has had a similar reaction. He is a very even-keeled sort of guy, but he gets very irritable and angry and somewhat depressed, too. My dc each also have the same sorts of reaction. It actually helps me understand them when they are reacting. I can understand that desperately sad, lonely, overwhelmed feeling that comes from NOWHERE related to circumstances (although the mind wants to find a circumstance to blame it on.) It helps me parent through reactions with a WHOLE lot of compassion.
Fortunately we all have other physical reactions, so it is pretty easy to tell that we have been glutened. We are still learning though so we don't always recognize it immediately. For us, we are not cheating...we are trying to eat very clean, but we are SUPER sensitive to CC.
Anyway, I hope that helps in some way. I agree that you need to NOT cheat and make sure you are not getting CCed.
My 16 yo dd only had one period and then never had another. It was one of the symptoms that drove me to figure out what was going on with all my kids. After two years without a period, she took a generic form of Provera for 10 days. She got her period before she even finished the progesterone and then stopped taking it. She has had two periods since then on her own. We don't know how much to attribute to the progesterone and how much to the gluten free diet, as she started the gluten-free diet not long before the progesterone.
The only side effect she suffered was an inability to sleep after a few days on it, but she is sensitive to artificial additives and it had an artificial coloring.
I just wanted to add here that my oldest dd's gastroenterologist supports the Enterolab results. He did do bloodwork on her which came back negative, but he said that was probably because she was doing well staying gluten free. He also did a gastroscopy (he was taking biopsies for celiac and for eosinophilic esophagitis - if it had just been for celiac we wouldn't have had the scope done). We haven't had our follow-up appointment yet, but after looking at her upper small intestine he basically said he would diagnose her celiac no matter how the biopsy came back. He said only 1-2% of celiacs show up positive in the biopsy.
My pediatrician also has upheld the Enterolab results. Part of that may be because of all the information he has received about my oldest dd from the gastroenterologist. When my pediatrician saw the Enterolab results of my 2 yr old, he commented that he was celiac. When I said the 2 yo hasn't been "officially" diagnosed celiac, he said that was what the results meant. I will be seeing the 2 yo's pediatric gastroenterologist soon and we will see where he goes with it (different GI than my oldest dd's.)
Anyway - some doctors DO accept Enterolab. My doctors are not naturopaths/holistic/etc. My dd's gastroenterologist does seem to stay on top of all the latest information though. He talked extensively about all the myths about celiac disease and how much things have changed in the last few years.
I would suggest that your dh find a gastroenterologist. I would not expect the average primary care doctor to be on top of all the latest info in the specialty of GI. I would check to see if you have a local celiac support group and get recommendations from them (I did an internet search.)
I agree with everyone else about checking EVERYTHING, but you might also want to consider those "gluten free" foods. Horrible thought, I know. We have found that we cannot trust them. In our house, we are very reactive to even small amounts of gluten - I am talking "shared production line" amounts. It is really frustrating. In the last 3 months, we have been glutened by gluten-free almond milk, gluten-free rice milk, gluten-free cookies, and gluten-free ketchup. These are all products that are specifically LABELED gluten-free! We have also been glutened by chips and now either tostada shells or refried beans which weren't specifically labeled gluten free, but are supposed to be.
If your dc is as sensitive as our family is, it could be small amounts of cross contamination that keep her body in a high reaction mode.
How frustrating for you - I'm sorry! I hope you figure it out!
Yes, my 4 yo and sometimes my 2 yo get a low grade fever when glutened. It is a low enough fever to be considered "normal" (usually under 101), but he/they definitely run hot for two days. This is in addition to behavior changes, symmetrical skin rashes, and changes in BMs.
I am not an expert, but it is my understanding that the biopsy has to be done properly. It has to be taken from the skin right next to an active blister. You say your doctor took the biopsy from your back where there were no spots. Would he be willing to test again when you have an active outbreak? Or better yet - maybe you should find a new dermatologist who is more familiar with DH. If you have a local celiac support group, that would be a good place to look for an experienced doctor. I found a good dermatologist and a good gastroenterologist by googling my city name along with the key words "celiac" or "dermatitis herpetiformis." Both times it pulled up the website of my local support group and times that doctors had spoken to the group.
Again, I am not an expert, but it sounds like classic DH to me.