Celiactapper

I know first hand how sad and frustrating it is to watch a loved one suffer needlessly...and all because they're in denial. When I was diagnosed with celiac in 2004, I knew that my children and mother probably had it, too, because they'd suffered from the same symptoms for years. Instead of being happy to find out what was causing all of her illnesses, my mother was vehement that she didn't have celiac. I kept saying, "But, Mom, you've been anemic your whole life! You have night blindness, slow clotting, joint pain, brittle tooth enamel, and severe digestive problems!" She swore that I was mistaken--she said she didn't have ANY of those illnesses. For two years, I watched her health go downhill, and I couldn't understand how she could ignore the fact that she had celiac. Yes, I talked to her constantly about going on a gluten-free diet, but she just insisted that gluten wasn't a problem for her. Finally, she had a bone test, and it indicated that her bones were 70% decalcified. She called me, her voice shaking, and asked me what could have caused this to happen. I just softly said, "Oh, Mom, celiac causes that." She started crying, and she said that she'd known all along that she had it, but she loved bread so much, she couldn't face giving it up....but now she would. What it came down to is that it had to be HER idea. She gave up the bread and learned to make her own gluten-free bread--and she loves it! She's become a first-rate gluten-free cook and baker, and I'm proud of how well she sticks to her gluten-free diet. However, gluten does have a chokehold on some people--perhaps your mom is one of them. However, until she's willing to face her own demons, I don't think that anything you have to say will have an impact on her. Good luck!

I thought I would just throw out a thought--some celiacs go back and forth between diarrhea and constipation. This is very common. However, I agree that you should probably remove all dairy from her diet temporarily to see if it's the dairy itself that she is reacting to. Is it possible that the gluten-free diet corresponded with the addition of the probiotics? If so, then it could simply be that, after all the diarrhea, her system is now slowing down because she's not eating gluten. You might add prune juice or some other vegetable/fruit juice to see if her digestion normalizes. I can say from personal experience that when I've accidentally eaten gluten(which RARELY happens), I'll have terrible diarrhea for the first few days followed by horrible constipation. After a few days, everything returns to normal.

On other forums I've used, "DD" stands for "dear daughter." "DS" is "dear son," "DMIL" is "Dear Mother-in-Law," etc.

For people with celiac, it's common to be reactive or intolerant of other foods. For me, it's soy--lots of indigestion, cramps, diarrhea, and overall sickness. Also, many of us cannot eat iodine, and in some areas, it's present in high concentrations in milk and dairy products (so it may not be the casein...or just the casein). I've found that organic dairy products are fine, though. Try to avoid seafood, iodized salt, chips, crackers, and vegetables high in iodine like asparagus.

Another consideration is that you may have another autoimmune disease as a result of celiac. Have you had your thyroid tested recently? It can suddenly go bad and cause weight loss. Have you had a colonoscopy recently? If not, this might be a good idea, too.

Although symptoms of celiac can wax and wane depending on a number of factors, including stress, it's odd that your symptoms came on suddenly and are lasting so long on a gluten-free diet. Are you certain that your cosmetics (especially lipstick), shampoo, creme rinse, etc., are all gluten free? Is your kitchen shared by someone who can eat gluten, so there is a possibility of contamination? Are your supplements gluten-free?

BTW, from your signature, I'm wondering if you live in San Francisco (??). I live in the East Bay (Martinez) and meet up with gluten-intolerant people through meetup.com on a regular basis in S.F. and Oakland. Feel free to join us! Have you tried Pica Pica, a restaurant in S.F. that serves ONLY gluten-free food? It's great! We oftentimes meet at Mariposa Bakery in Oakland on Saturdays.

Good luck to you!

I'm so sorry you're having a terrible time on your trip! I know that here in the States I avoid Japanese restaurants like the plague. I can't imagine how awful it must be to try to find something to eat amid all that gluten. When I read your subject line, I assumed you were talking about the States. I've been shown the door before--at a Chevy's restaurant, no less. I was told that I might fare better at another restaurant--I nearly cried.

Have you found any markets that sell fruit or nuts? I know....not the most satisfying foods. I hope your trip will be short in duration....

I always call the manufacturer directly (I no longer trust the pharmacy to do so). You can find the phone number by looking up the manufacturer online. Many manufacturers will return your call even on a weekend. It's tempting to simply e-mail, but sometimes there is a long lag time before they respond--or they never respond. However, when I've phoned, I've ALWAYS received a response within a few hours' time.

Regarding Atenylol, it was gluten free when I used to take it....but it turned out that it had a severe side-effect that I didn't connect with it: it gave me horrible spinal pain. It took me two years to figure out that it was the Atenylol causing it. Just FYI.

Unfortunately, it appears that the link no longer works for this article....but I would love to read it.

I don't have this problem, but it sounds as though your gut needs to be healed. Have you tried taking L-glutamine? At celiac conferences, this has been recommended because it heals the gut so well. Metagenics medical food is also good.

I personally don't believe enough studies have been done of DH to establish whether or not it's always symmetrical. I can only say from a personal point of view that my son and I (both celiacs) get DH on our faces and necks....and then I also get it on the sole of my right foot and on my left hand, while my son gets it on the sole of his left foot and on his right hand. Weird....but true. Obviously, the idea that DH must absolutely be symmetrical can be easily contradicted.

Many of us have been where you are now. The easiest way to approach this is to eat only natural foods--fruits, vegetables, meat, most dairy, and nuts. You don't need to understand complex ingredients yet, because you'll only be eating basic foods. As for seasonings, simply eat basic herbs for now. Cookbooks? You can use the ones you have! Simply substitute gluten-free ingredients where needed. When flour is called for, substitute with Bob's Red Mill Gluten-Free Flour (and if baking, also add 2-3 teaspoons of xanthan gum). Believe me--once you've eaten natural foods for a while, you'll lose your taste for processed foods. It's not scary...it's healthful eating.

Good luck!

The latest studies on children with celiac indicate that children with celiac oftentimes exhibit neurological/psychological symptoms when exposed to gluten, usually ADHD, clinginess, or depression. Does your son have a history of any of these conditions? If so, when he eats some gluten, he may exhibit such symptoms.

You sound ultra-careful about your son's condition. Over time, you'll relax. In the meantime, I would recommend avoiding restaurants that don't offer a gluten-free menu--this means that staff has not been trained in the proper preparation and serving of gluten-free meals. There are Websites that list the restaurants that offer gluten-free menus. One such list can be found at www.gluten.net . This is run by the Gluten Intolerance Group of North America, and they train and certify restaurants (including chains) throughout the U.S. Good luck to you and your son!

Wine is definitely gluten free; however, liver problems are a concern to many celiacs. A stomach ache and a pain in the right shoulder can be consistent with liver problems....so if you haven't had your liver tested lately, you might consider doing so. However, your pains may have been completely coincidental. When you're new at the diet, it's easy to question everything you put in your mouth. Good luck!

This question has been raised before and received a plethora of responses. I've been separated for nearly two years, and I thought that I would probably enjoy getting back into the dating scene once I'm divorced. However, after perusing dating sites, I realized that it would be difficult to present myself to someone through this type of medium when I have such restrictions to my diet. I recall that several men said something akin to, "If you're a picky eater, then I'm not your guy," in their descriptions of what they were looking for in a partner. Almost everyone seemed to state that they enjoyed barbecues, dining by candlelight, and other activities along those lines. I just didn't seem to fit in anywhere....and concluded that when I'm finally single, I won't be using the dating site route.

Personally, I think that having a partner who must always accommodate my diet may eventually cause resentment or embarrassment in the relationship. I mean, what if we were to stop by his parents' house unannounced, and Mom just happened to be cooking the world's most wonderful dinner ("my son's favorite childhood dish...."). It would really make me feel bad to tell her that I couldn't eat her meal, and I'd assume that my boyfriend would feel bad for both his mom AND me. Also, the idea of getting kissed by a man who has just taken a swig of beer or a bite of a sandwich actually fills me with fear--kind of cuts down on the romance, don't you think? For me, Id very much prefer dating/marrying a man who has celiac or is gluten intolerant--life would just be easier.

Now, one might think that finding another celiac would be like finding the proverbial needle in a haystake. However, we have something to our advantage: many of us have faces their mirror other celiacs'. Dr. Peter Green spoke at the Annual Conference of the Gluten Intolerance Group in Seattle last year and mentioned that an Italian study had shown that celiacs' facial bones set later in life. This causes our facial bones to fall at different points on our faces than "normal" people's facial bones. Since studies have shown that people are attracted to others whose faces mirror their own, it makes sense that we tend to be attracted to one another. This would certainly explain why so many people discover later in life that BOTH partners have celiac...and never knew it. At celiac conferences across the nation, I've noticed sparks fly between men and women with celiac, and I've personally met a man who knocked my socks off (at that particular conference). It's like an immediate infatuation. So....if you have celiac and feel that there's no hope that you'll ever find someone like you, don't worry--nature is working to your advantage. (And attending celiac conferences helps, too!)

For me, it was the feeling that I was burning up all the time that tipped me off to a thyroid condition. The medical information on hypothyroid tells people that they'll feel cold, but if you read deeper, you'll note that it can also cause the opposite. Basically, we celiacs have a tendency towards developing Hashimoto's Thyroiditis, and I can tell you that I felt like I was on fire, especially after running. However, over time, I became hot about six times an hour for no apparent reason--even throughout the night. And I'd be covered with sweat pouring down my face. It was awful! How wonderful it was when I discovered that I actually had Hashimoto's. The sweats stopped within days of starting the meds and no more feeling overheated.

And do remember that you'll need to avoid iodine for a while, as well, since it takes both gluten and iodine for many people to break out in DH. Since iodine can be high in dairy products, you may consider changing to organic dairy to see if doing so helps get rid of the DH.

Oh, my....your childhood sounds like mine. I mainly remember that, as a child, I couldn't control my circumstances. You're in a difficult situation right now and one that needs to be shared with someone who can advocate for you. The fact that your parents are not ensuring that you receive proper foods and nutrients is tantamount to child abuse. It sounds as though they are essentially clueless to this possibility, but you are describing a Hellish life...and I'm so sorry you have to go through this. You're correct that you may have to get a part-time job--that's how I was able to afford to buy my own food when I was an adolescent and teenager. However, your parents need to understand that it is their responsibility to provide you with adequate, nutritious food--at least fresh fruits, vegetables, nuts, and meat.

The symptoms you recall from your childhood are textbook examples of what happens to children who have celiac and aren't diagnosed. At a recent conference, I learned that children with celiac have reduced bloodflow to their front lobes, which can cause fuzzy thinking, memory glitches, mood swings, depression, and ADHD. Also, plaques can form throughout their brains, further causing neurological problems that can last a lifetime. With such severe symptoms, you NEED to seek out an adult who can help you with your situation at home, get you proper medical care, and make sure that your teeth get checked. Are there any celiac groups near your home? I know that the Gluten Intolerance Group of North America has a national celiac support group for teenagers. You can find information on their site at www.gluten.net . Perhaps you can find support and help there.

Please feel free to rant about your situation--this is a safe place to do so. I'll be keeping you in my thoughts...and please ask if you need help.

Of course, there is no way to know for certain; however, recent studies have shown that the frontal lobes of celiacs' brains don't receive enough oxygen and that plaques can form throughout the brain during childhood. This information was presented at the recent Gluten Intolerance Group's Annual Conference in Minneapolis.