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 just saw this the other day too. We only do fresh tofu every once in a while so I haven't tried it. Except for the flavored tofu Wildwood products are gluten-free: http://www.wildwoodfoods.com/products/meat-alternatives/burgers-crumbles/tofu-crumbles/tofu-crumbles-2.
The veggie burgers also look a lot like Moringstar Farms - definitely look like they stick together better than some of the other gluten-free ones out there. I love Sunshine burgers but they are so quick to fall apart. Sol stuff is great too.
I am taking a cruise on Holland America in a few months and am curious how your recent experiences have been? I've read quite a few reviews on here and other sites but many of them are older so I'm curious if anyone has gone in the last year or two and what kind of experience you had.
We are on the ms Nieuw Amsterdam and I'm curious how the service is in restaurants other than the Main Dining Room. Room service, Tamarind, Lido, etc. and have they gotten better about having your pre-ordered gluten-free items available? How difficult is it to find a knowledgable person at the buffets?
Also, has anyone had a positive experience ordering a custom gluten-free cake? If so, how was it? Does it taste gluten-free or would non-gluten-free people eat it without comments? Is the chocolate or yellow better?
It does stink. It took a while to learn not to trust a lot of processed foods. You might want to call Tyson and tell them about it. Some companies will batch test the product to see the gluten content and share it with you if you ask them to.
Positive bloodwork is a diagnosis of celiac. I'm not sure false positives can happen - however false negatives are very common. It is odd to me that a GI (or more than 1 in this case) would think they need to scope a toddler unless she is having other problems outside of celiac. Did they give you a reason for doing it? (like wanting to assess damage or did they tell you it's the only way to positively diagnose). Also, many uneducated doctors think that you can't have celiac unless you have diarrhea which isn't true - many celiacs present constipated.
Edited to add a few links supporting blood test only diagnosis without biopsy in children:
From 2005: "Some researchers are making a case for dropping the biopsy requirement if the antibody blood work checks out in children, for whom (and for the parents) endoscopy and biopsy is a major issue." Link: http://www.celiac.com/articles/978/1/So-Why-Do-Celiacs-Still-Need-Biopsy-By-William-Dickey-PhD-MD-FACG/Page1.html
From 2011: "This month the Journal of Pediatric Gastroenterology and Nutrition reports children who have the celiac gene and test positive in serologic (blood) testing, may not need to have the biopsy." Link: http://thesavvycelia...me-celiac-kids/
Celiac Center in Maryland: "The current diagnostic tests for celiac disease are very accurate, particularly when tTG and anti-endomysial antibodies are elevated. The isolated presence of anti-gliadin antibodies does not necessarily imply that the subject is affected by celiac disease, with the exception of children under the age of 2 in which tTG and EMA may not be present. " Link: http://www.celiaccen.../celiac/faq.asp
Taterhart, the last link also provides information on genetic testing:
"As an autoimmune disease, celiac disease is the consequence of the interplay between genes and the environment (gluten). We don’t know all the necessary genes to develop celiac disease; however, HLA DQ2 and/or DQ8 are absolutely necessary to develop the disease. Since 1/3 of the general population also have these genes, the presence of DQ2 or DQ8 does not imply that the person will develop celiac disease, rather, that they have a genetic compatibility with celiac disease. Conversely, the absence of DQ2/DQ8 almost certainly rules out celiac disease. "
LOL I don't blame you. If it's important to get a formal diagnosis for your kids then yes you need to put them back on gluten and see a Dr. as soon as you can (the longer you keep them gluten-free the harder it will be to get a proper diagnosis). I don't have kids so I can't speak to how they diagnose the little ones but I assume they do a blood test and not an endoscopy. Perhaps someone else can give you more details on that piece.
It sounds like you are OK not having a formal diagnosis so that's good. You'll find many people here who are the same way and I personally feel that if your body says it doesn't like something then listen You might consider genetic testing to see if you all have the genes - it doesn't mean that you, or any of your family members, actually have celiac it is however a good thing to know if you carry the genes.
Richard is correct but I've seen both wheat and barley in stocks very recently - the barley didn't surprise me becuase I've noticed that for years in Trader Joe's brands but I have never seen a stock with wheat gluten it until last week.
College Inn brand chicken stock has wheat gluten. And, at least one of the Trader Joe's stocks has barley in it so if you are still learning always check the label or go with a brand you know is safe - the ones off the top of my head are Costco, Pacific, Kitchen Basics, Swanson, Progresso, and Imagine. I'm sure most of the store brands are gluten-free as well.
Unfortunately that doesn't help you when it comes to processed foods sometimes.
No need to feel like a crazy lady Everyone feels that way initially. It's a huge process of trial and error so don't get discouraged. It can take several months sometimes to really see a difference and think about this way - just ask yourself are things better or worse than last week or month and over time if it's working you'll see progress. As for your daughter, try to find some premade gluten and dairy free stuff. Bold Organics makes a really awesome gluten-free/df pizza and Pamela's makes some really great cookes that are dairy free.
Welcome! I think you just described most people's experiences with doctors - even the adults
You should definitely find a good celiac (and food allergy) Doctor in your area. It certainly won't hurt to have them checked out and it is odd that your entire family seems to have similar digestive issues. The constipation could be caused by an intolerance to dairy - it tends to be a source of continued constipation in a lot of celiacs when they are first going gluten free. You might also try a diet that is free of all of the top 8 allergens for a week or two and see what happens.
Also, just a note - if you do decide to pursue the celiac option you need to understand that everyone needs to continue eating gluten until all the tests (endoscopy/biopsy, bloodwork, genetic test) are performed as you can have false negatives if you are already gluten-free. The tests aren't perfect so you can have false negatives anyway or just be gluten intolerant which won't show up on any test either. It could be food allergies/intolerances as well. It really comes down to how important it is for you to have a formal diagnosis.
A lot to think about and check out but it sounds like you are on the right path!
Check out the Atlanta Gluten Free Dining Club (I think that's the name) on meetup.com - they have monthly events and lots of information on where to find local products, restaurants, doctors, and gluten free events. There is also the Metro Atlanta Celiacs group which maintains lists of gluten-free friendly restaurants and knowledgeable celiac doctors among other things. They also have events as well.
I have to respectfully disagree with GFinDC on the OTC cow thyroid supplements. (And I know that you mentioned you don't have Hashimoto's and I'm focused on Hashi's in my post here).
Nicole, I'm not trying to confuse you or complicate things for you but it's best that you work with a physician and determine if you have Hasimoto's or some other thyroid condition and figure out what is causing your exceptionally high TSH before treating it with an OTC medication with questionable effectiveness and potential risks. Cow thyroid is not the same as pig thyroid - one of the reasons pig thyroid is widely used as a prescription natural treatment is because human and pig thyroids contain similar amounts of T3 and T4 and I'm honestly not sure that bovine thyroid is that similar. I don't want to overwhelm you with too many details but if you have Hasimoto's you need T3 and it needs to be monitored as closely as your T4 levels and often make frequent adjustments in the beginning.
Please read these two articles on bovine (both of these sites are excellent sources for thyroid information in general as well) :
You might be sensitive to coconut or you might have a problem digesting it because it's high in fat - not sure. I tend to have problems with coconut milks and stuff with a lot of additives in general but I don't think it's gluten related. I think my body just doesn't tolerate it well. I will say that I trust So Delicious more than Trader Joe's brands so maybe it's a brand thing?
Your symptoms are very similar to mine and I was diagnosed with both within a few months so it was hard to tell which symptoms were caused by which disease. You'll find that Thyroid problems are very common in celiacs and most people improve significantly once they are properly medicated and on a gluten-free diet. Try to find a celiac knowledgeable Endocrinologist in your area if you can - it will make a huge difference.
And FYI - the labs are using an old measurement for TSH (you'll see the high range from 4.5 - 6). Most knowledgable Endo's agree that TSH to be 3.0 or below and the more progressive ones like it to be below 2. And as far as meds go, choose the one that makes you feel the best. Some people love natural (pig) and others synthetic - it's really a personal choice. I've taken both and know which my body likes so I go with that.
Like Gemini said - thyroid problems really aren't a big deal - just one little pill and it will make a world of difference. I hope you feel better soon!