• Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can 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-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is 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 Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes


Advanced Members
  • Content count

  • Joined

  • Last visited

Community Reputation

0 Neutral

About mdzplus2

  • Rank
    New Community Member

Contact Methods

  • Website URL

Profile Information

  • Location
    Oklahoma City
  1. My 16 yr old DS has been gluten-free for 2 years but still has recurring stomach aches, low level most of the time with occasional severe spikes that make him miss a few days of school. He avoids gluten like the plague so there is no question that he is getting some elsewhere. Lab tests two years ago showed a 'generalized dissacharide deficiency' in these enzymes: amylase, lactase, sucrase, maltase and palatinase (isomaltase). Of the several doctors I showed these test results to, none ventured an opinion on what should be done about it. I now suspect that these ongoing stomach problems are the result of these enzyme deficiencies. I think we should try supplementing with GOOD enzymes but I'm not sure where to begin. So many on this site swear by the SCD but I know he will not be too enthused about more dietary restrictions. Does anyone have tips on where to find the right enzymes that will be effective? I also have a 5 yr old DS with autistic like symptoms and have made great progress with him by eliminating yeast and gluten and soy. I have been reading on line that a lot is being discussed about the benefits of enzymes for this group as well. What is the general concensus about enzymes? Could the 16 year olds two year old lab results still be a current problem or would the gluten-free diet have resolved them? Are there tasty effective enzymes for a picky 5 year old? Any info will help.
  2. Has your son improved at all yet? I sent you a message. Still sorting out how to use the board. My son has many similar issues and is 14. He hasn't been to school since January. It's a very stressful time. I'm now considering the Specific Carbohydrate Diet, antibiotics, and have scheduled another endoscopy. He was diagnosed in July 2006 and has been gluten-free ever since. He was also diagnosed with GERD and esophagitis and just last month asthma. I don't know how I would hold up under the stress he must be feeling.
  3. I'm sorry your son is having an awful time. I hope things are better now. Have you ever tried using Epson Salt in his bath? You can research that on Google. They sell it at Walmart. Maybe just a long playtime in a tub full of warm water where the salts have already disolved would relax him enough. It's not just the relaxation, the magnesium will actually help resolve the constipation. Poor little guy. I hope things are better now. Best of luck.
  4. My 14 yr old DS has been gluten free since celiac diagnosis last July. The endoscopy also revealed esophagitis and he's been taking Nexium 40mg ever since. He's too tired, depressed and has a constant dull stomach ache that spikes in pain after every meal. Every meal! I know he is gluten free (always everyone's first suspicion) because our house is gluten free and he's been house-bound now for weeks, unable to attend school and barely able to get much homework done here. Of course he is depressed! His life is on hold right now. We just did another round with the pediatric GI and his regular pediatrician. All tests were negative for things like cytomegalo virus, thyroid, infections, and even a breathe test for lactose intolerance. Clean bill of health but the kid can't function. So here's my question. If Nexium reduces stomach acid, isn't it also reducing digestive enzymes? Is this something that can cause stomach aches? Should I be giving him enzymes? I don't think the stomach aches could be causing the fatigue. But if we can lob off one issue then maybe we can zero in on others. Any thoughts?
  5. Thanks to everyone. All very helpful. Today we de-gluten!
  6. I posted here a few days ago (Is he faking this?) and have received so much help and support that now I can't think of a better place to go as I muddle through the problems I now face. Some of you replied to my original posting with great advice about making sure all the pet food was gluten free. Of course the dog's food was not. I ran right out and fixed that. Then I searched here for brand names and will go to Walmart with my fingers crossed that they carry some of those higher end brands. I have three year old twins and if they don't sell it at Walmart then it doesn't exist in my known universe. So the dog is solved. I'm going to scrub down the laundry room where he eats tomorrow with bleach, replace the food mat, scour his dishes, glare meaningfully at him.... Then I checked on the bird seed for our 15 year old cockatiel. I did this this morning. I'm so glad that I didn't do it before I went to bed last night because if I had, I would have never slept a wink. Gluten. I can count maybe 7 different seed varieties in the bag and yet the ingredients is a list of at least 40 items with three different versions of wheat. I checked all the brands available at Walmart and they all have wheat. I called a vet for more brands and checked those online and they also contain wheat. So the bird is looking for a new home. But here's the really horrible part. His cage is in the corner of the family room, seed spashes out constantly. My kids play in there, lay all over the carpet, have been observed driving toy trains through discarded birdseed that I have failed to vacuum. And this is probably the source of all of our problems here. So now I've moved the furniture and vacuum twice and then used the crevice tool in all the nooks and crannies. I've scrubbed the cage with bleach and hosed it clean. I've thrown away the old seed and he'll be eating nutritiously inferior millet sprays until we find him a place to live out his remaining months (he's already older than the average age span!), and now I'm just left wondering....should we also have the carpet professionally shampooed? My husband thinks this is overkill. But if we don't and the kids are still reacting, we once again won't know if it is this unresolved issue or something else. Sorry for the length of this post. It always boils down to this: how lucky do I feel? Well, considering that all of my kids have a disease I had never heard of just two years ago, I'm not really feeling too lucky! So do I shampoo the carpet??
  7. This was really helpful to me. Actually since reading all the replies to this posting I have finally made up my mind to completely believe him about his health from here on out. No more doubts. I actually did a chart to sort through the eventual outcomes of the four possible scenarios: he is being honest and we believe him, he is being honest and we don't believe him, he is being dishonest and we believe him, he is being dishonest and we don't believe him. The only one that has any chance of having him grow into a healthy happy adult, as far as I can see, is clearly 'he is being honest and we believe him'. So I am now committed to believing him. But that said, how then do I deal with my guilt and sympathy? Do you ever feel that you baby or over empathize with your son because of his health problems? Thanks so much for sharing your story.
  8. I've been discussing this with him the last few days. Well, not the soy but definitely the casein. We'll try something new after we see the GI on Monday afternoon.
  9. [quote name='Mtndog' date='Feb 6 2007, 08:06 PM' post='266999'] I was thinking cross-contamination too or gluten in some product he uses. 14 is a tough age, but unless something is going on at school (have you asked him if school is OK?) then it could be getting gluten from somewhere you don't suspect. I've been gluten-free for 2 years and I still have days where I have those vague symptoms (the same as his). It was especially bad the first year. It does take awhile to heal too.
  10. Boy, this hits really close to the mark with him. How awful to think now that he really may have several more years of this. How did you cope? May I ask, do you remember feeling better after going gluten-free at 13 but just never quite well or was it that you felt great then but then just kept getting every illness you were exposed to? -Debbie
  11. Does he eat out? Restaurants are very risky for cc. Is your kitchen gluten-free? If not, could he be getting cc'd at home? Not saying you need to go gluten-free at home necessarily but you do need to take steps to prevent cc. Check the bath products he uses to make sure they are gluten-free. If all of that is taken care of, then you might consider other intolerances. My daughter has had to also give up dairy and soy to completely get rid of her stomach problems. One other thing to consider is that symptoms from a tiny mistake can last for several weeks at least. Thanks so much for your quick response. Our kitchen is very close to gluten-free and those items that are not gluten-free are closely managed, never cooked using gluten-free designated cookware, and are not things that DS would crave. Eating out has only consisted of the Steakbowl at TacoBell for a long time now. The bathroom products is where I'll go next. I think he is lactose intolerant since I've seen an improvement that I am attributing to the Lactaid. Thanks so much for all the tips.
  12. I'm a first time poster so if I do this wrong, please be kind. My 14 yr old DS was diagnosed last July after two and a half years of gastro symptoms. He went gluten-free right away and has been amazing about sticking with it. He has seldom even complained because he felt so much better after starting the diet. But now, all these months later, he still is not completely well. The pain he'd been in before is gone but he still misses days from school frequently with many of the same sort of vague symptoms that had become his trademark before. His new GI has started him on a month of Levsin and I've added Lactaid and Acidophilus Pearls and this has been administered for about 3 weeks now. But he stayed home today with a headache, muscle aches, neck pain, nausea. Is it flu? No vomiting, great appetite. I feel so guilty about this diagnosis, both my delay in getting him in for testing, as well as the difficult road ahead for him, that last semester I ended up letting him miss so many days of school that he almost got kicked out. And this was after the diet began. I just wonder though. I can't help but wonder if, after three years now of being sick almost constantly, it has just become who he is. I feel like the parent of a chronically ill child who is never really well. I hate what it is doing to us. My suspicions, his denials, our mutual anger and distrust at really a critical time in his life both by his age and with this diagnosis. He wants to exert his independence from me but suddenly can't eat without my direct involvement seemingly. Any advice?