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
Just an idea, but my health insurance plan does cover appointments with emergency medical practices. The ones in my area are pretty much the same as going to any other regular doctor's appointment, but they have broader hours and will even see you without an appointment. Perhaps they could cover some of your needs for having tests run? I know it would be odd to ask a second doctor to help out when you can't get to your primary, but could that type of thing be a stop-gap measure until you hit your one-year anniversary at this job?
I'd definitely go get my hormone levels checked and get tested for vitamin deficiencies. They are both common in those with celiac and are easy to test for with just a blood draw.
Get the actual numbers of the test results so you can do some of your research into the "normal" ranges. Though your doctor may say everything is okay, just being too far in one direction or the other can still cause symptoms even if the health insurance agencies don't want to pay for treatments. (No, I'm not jaded. lol)
If those are all fine, I'm not sure what I'd try next, but you are in good company here. Fatigue seems to be the most common complaint of those who have been gluten free for a while but still have lingering symptoms.
So sorry to hear that one night out did so much damage.
I didn't like Greens' beer because the alcohol content was too high, but Redbridge wasn't bad for a pale and didn't mind the one Bard's that I tried. I was a Guiness girl before going gluten free so I definitely miss my stouts.
When it comes to liquors, you can still enjoy, just have to figure out which types and brands are safe and hope that the establishment isn't putting cheap versions into expensive bottles. I was never a big fan of drinking and now I know why, but there are options out there.
Also, if you can find a grocery store that specializes in organic or natural foods, they may also carry gluten-free beers that you can experiment with. And if your stores don't carry the brand's that get good reviews online, they may be able to order them for you by the case. I suppose if you end up not liking them, you could always have others over to help finish them off.
I've been using Country Life Superior B12 tablets for supplementing my B12 and they do get absorbed. You don't have to rely on shots. You just have to make sure you get a sublingual tablet that dissolves in the mouth. Though the dose is huge, not all of it gets absorbed, but enough to have dramatic increases in my test results in just one month, as well as making my painful symptoms disappear.
I'm having a more difficult time with my vitamin D and iron supplementing, much slower going. But I'm getting there. I still haven't figured out which one of them gives me kidney pains so I haven't been taking them as often as I should.
When it comes to veggies, you may have the power to overcome some memories from the past. I used to despise asparagus, but it turns out that my mother was just overcooking it. I do spears in a pan with some butter, water, and a lid and let them steam for about 4-5 minutes on low heat, then only eat down from the top until I hit any parts that are tougher that I missed cutting off enough of. They are now one of my favorites.
Same goes for brocolli and I've even enjoyed a brussel sprout or two if they were young, fresh and prepared right (though I'll still never buy these myself). So that is three of my least favorites that I've learned to live with.
There have also been some psychological studies that show that we have a tendency to dislike foods until we have tried them 10 times. I used to dislike both yoghurt and strawberries but after learning this, gave them another try, and then another, and then another and can now enjoy both of them. And I wouldn't overlook texture aversions when it comes to some veggies. Different cooking methods could help overcome that.
If you aren't a fan of zuchini now, try slicing them into a pot that has some butter melted in the bottom, slices about 1/4" thick, salt them and stick a lid on it at low heat for about 10 minutes, maybe a little longer. You can see that they are finished when they start to go from white to a more yellow color. The salt makes them release their liquids and they can turn a little mushy, but they end up tasting rather sweet.
Otherwise, you could try putting just a little of the veggies that aren't your favorite into stews or soups until you've learned to appreciate the flavors. Or add some items to salads. You could make a game of it and try adding a new vegetable to your repertoire every month, perhaps experimenting with different cooking methods as you go. They won't all be winners, but it could be fun and you could end up discovering that you actually like more than you realized.
I'm not sure if I believe them when they say that the gluten has to be ingested. They claim that the protein is too large to pass through the skin but I read stories here and there about people having to make sure they switch to a gluten-free soaps and shampoos after going gluten free in order to avoid rashes.
The medical establishment seems to know so little about gluten reactions that I wouldn't be surprised if they focused only on the damage being done to the small intestines when they say that skin contact wouldn't have any effect.
I used to break out in hives on my hands and get rashes on my wrists back when I was still consuming gluten, but only here and there. Of course, I can't remember the meals back then, but I have to wonder if it was from when I ate foods that were picked up rather than eaten with utensils. I can tell you that I don't risk it these days.
I definitely react when I breath in dust in the air that contains gluten, which would be a problem if you worked around flour. For me, it just feels as if I have a sinus infection, lots of pressure in the cheeks and forehead and some ear aches, plus a little more phlegm production overall. But I've also never had DH as a symptom.
I'm gaining weight more so than I ever have before, though age isn't on my side on this one either. I think I'm up by about nine pounds in the past nine months. I know that plenty of my issue is that I've been eating too much and not the right things, especially in the first six months when I went through the phases of buying all of the gluten-free products so that I didn't feel deprived, then cooked lots of really rich foods in my own kitchen ... so that I didn't feel deprived. I'm back to a more normal routine for me, but I still have a penchant for the high-calorie foods so I'm trying to curb that.
At first, I also seemed to crave food all of the time. I don't think this was emotional. I got tested for vitamin deficiencies and had some which may have been why my brain was telling me to eat more. Getting those straightened out does seem to be helping.
But I've told myself that I'm not going to worry about my waistline until I get my vitamin D levels up again. Vitamin D is more like a hormone and deficiencies are linked to weight gain.
I'd also be wary of the gluten-free equivalents of many gluten-free foods because they are higher in calories (and often lower in fiber).
I'm also trying to up my exercise a bit in frequency, just adding a few more 30-45 minutes walks into my week. I know that it will be more difficult to lose weight now that my body isn't dropping weight without even trying, but I'm trying to stay focused on my health rather than worrying about my size for now.
Another thought, I wouldn't underestimate just how far you have to go in order to actually be gluten free or the emotional strain getting a diagnosis has dumped on you, first not knowing what was causing problems, and now, starting to discover how much your life is going have to be modified going forward. Just the amount of learning that needs to be done in the first few weeks is pretty huge. But it does get easier once you've figured things out.
I had a friend who thought he was doing okay at being gluten free for years. In hindsight now that I know that I have a gluten problem too and have more knowledge, I realize that he wasn't gluten free at all, and probably still isn't. I'd watch him eat the hotdog out of the bun at ball games, and he didn't realize that all vodka wasn't made from potatoes! He still eats out regularly, and I know I've been glutened from the same meal that he ordered when he doesn't notice it. When I see him online in the middle of the night, unable to sleep, I have to wonder if he glutened himself again.
If you put in the time and effort up front to get really informed about cross contamination and hidden sources of gluten, you could save yourself a lot of hassle down the road and get back to the healthy form you desire. There is the newbie thread here on this forum, and I'd research hidden sources of gluten so that you don't get whalloped with them accidentally. Seek out the natural and organic grocery stores for more gluten-free options than what you can find in regular stores (they may even be able to order gluten-free beers for you).
Every accidental glutening often comes with days of recovery, so the better you are at avoiding them, the sooner you'll get back to top physical form.
And feel free to keep updating those profile pics with the topless shots. We women will appreciate it.
You seem to already be doing the right things, looking into hormone imbalances and vitamin deficiencies, though getting the actual numbers from your tests so that you can do your own research may be a good next step. Often the "normal" ranges are too wide, and many can still have symptoms when they are near the edges, though many doctors won't consider this for some unknown reason.
I don't get fatigue per se, but I do sometimes get what appears to be something like reactive hyperglycemia which got better for a while, but seems to still arise here and there. My cold feet went away completely when I went gluten free nine months ago but have returned in the past couple weeks, back to throwing a heating pad into my bed so that I can get to sleep at night. I don't yet know if I'll have to wipe out all of the products that are being sold as being gluten free in order to eliminate the parts per million.
I do have low vitamin D and iron levels that I'm working on. I'm hoping that the vitamin D will help keep me from feeling tired after eating, and that iron helps with the cold feet, but I really don't know yet. Getting my B12 up seemed to help with some other symptoms though I also throw in a multivitamin about once a week just to be on the safe side for everything else.
But I think it is time for me to start keeping a food diary, and seriously. I've been avoiding some of my old favorite foods like my smoothies because I'm reacting to something in them, but haven't figured out what. So it may be time to start playing around with some modified versions to narrow things down. At first, I didn't think that dairy was a problem for me, but now I'm not so sure.
I know, not specifically an answer to your question, but sometimes it helps to see what others are considering trying.
On another note entirely, I was doing some research into the causes of celiac and came across some scientific studies that found the molecule, interleukin 15, which actually tells the body to overproduce T cells. Interleukin 15 also has some connections to the Epstein Barr Virus which can cause Chronic Fatigue Syndrome. Once you've had mono (and most of us have, even if you don't remember it), the virus is with you for life so there may not be a solution, but perhaps looking into it could give you some other ideas for how to overcome your fatigue? Mono is also one of the illnesses that some people suspect as a trigger for "turning on" their celiac genes.
Congratulations on getting a diagnosis. I say that because I so wish I had figured this whole thing out 20 years sooner.
I had plenty of weight loss issues, but they did improve when I wasn't eating gluten. It sounds as if you have a great motivator for staying gluten free so I'd also see this as a positive.
I'd get tested for vitamin deficiencies due to the obvious malabsorption issues as some can't be fixed with just a multivitamins or by eating the proper foods because of damage that is still in the process of healing.
Otherwise, I would probably consider modifying your work-out routine for these first few months so that you're not overtaxing your body as it is trying to heal, then slowly work back up to the higher levels again.
And already finding and using this forum is huge. I still learn things all of the time. You'll probably have all sorts of accidental glutenings in the beginning, but it does get a lot easier, especially if you take advantage of sources like this for less-well-known information.
And for phase two of your gluten-free life, I'd plan to get into the kitchen and cook more foods from scratch rather than relying on foods sold as gluten-free. They are really good at helping you to feel as if you're not deprived of anything in the beginning, but like any pre-made or processed foods, they generally aren't the best thing that you can be eating.
Speaking from experience, I can tell you that making a huge batch of potato salad with eggs, black olives, and spices, is a great way to tack on a pound or two.
My pain in this area appears to have been caused by the B12 deficiency that came from malabsorption. It persisted after going gluten free, but has improved since getting my vitamin levels tested and supplementing. I'm two months pain free after six years of recurrent issues so I'm hoping this was the answer.
But if you do get tested for deficiencies and they exist, don't just treat them and move on because you fear having to give up wheat. Look for the cause of the deficiencies so that you don't end up with even more problems.
Yes. Most people mention that they can't go into bakeries that make gluten products because of the dust in the air, and I've walked out of a restaurant where I was seated too close to their prep area for making pizza. I have been glutened from cleaning an area where wheat-based kitty litter had previously been used, though without gastro symptoms, just sinuses and all of the anger/headache/brain fog after.