New Celiac

[kraye80]

Hello, I have a few questions. I was diagnosed in January from a blood test and since I was in denial I did more research and found that endoscopy's are the only 100% way to know so I had one done in Feb 2011 and it came back positive. My problem is I have absolutely no Celiac symptoms(maybe the bloating) The reason they checked me is because I went 15 days with no BM and I have Hashimoto's disease so they figured I could have another autoimmune disorder. The doc said she really didn't think I had it but would run the test just to make sure. She called me with the results and couldn't believe the results because I was full blown positive. I decided to go to a stomach doctor and she told me that my celiac disease and my constipation have nothing to do with each other. I have been gluten free for 7 weeks now and after a colonoscopy 3 weeks ago my doc put me on a drug called amitiza for the constipation, for the last 3 weeks I am lucky that I have gotten grape size stools out of me once a day. What is going on?????????? Now since 5 days ago I feel like I have menstrual\gas cramps all over my stomach all day long. I've taken miralax for the last 4 nights, gas x 3 times and still no bm and my stomach pain is still here. My doc just told me to take more miralax because it's probably because I'm backed up. I don't feel like I normally did when constipation. Has anyone had this problem? Also, since I don't have any symptoms of celiac how do I know if I am better or not? (All my vitamins levels are great and always have been) HELP please!!!

[RiceGuy]

Firstly, the constipation can certainly have a lot to do with Celiac. I'd suggest firing any doctor who tells you otherwise.

It can take time for the body to begin to heal and correct all the things which have been going wrong. It depends somewhat on how long the immune system has been reacting to gluten, regardless of how you've felt. If memory serves, an estimated 30% of people with Celiac Disease do not experience outward symptoms, though internally there are certainly things going wrong. You may also have other food intolerances/allergies/sensitivities yet to discover. And ones which you do not have now can arise.

The best advice on an initial gluten-free diet is to eat only unprocessed foods. Fresh veggies, fruits, legumes, grains, nuts, seeds, etc. Plain, unprocessed meats if you are a meat eater. Add your own spices and flavorings. Dairy is often not tolerated at first, so it is usually best to avoid it at first, until your body has had time to heal sufficiently. Then add it back in to your diet slowly if you desire, and watch how your body reacts.

If you live with gluten-eaters, you may also be subject to CC (Cross Contamination). You will need to be very careful in this regard. If you buy or bake your own gluten-free breads, you'll need a dedicated gluten-free toaster if you want to toast the bread. Things which have even tiny surface pours or scratches can harbor gluten, and contaminate your food. Such things include colanders, cutting boards, wooden utensils, cast iron pans, strainers, scratched non-stick pans, and even plastic containers once they have received scratches. If others in your household bake with wheat flour, it is a real problem, since flour can become airborne, and it gets everywhere. Breathing it in often causes problems, even if the air doesn't appear to have particles floating in it. Even smelling wheat bread toasting or baking has been known to cause reaction in some persons.

You may find it helpful to post what you've been eating. Others may be able to point out culprits which you aren't yet aware of. Or it may be that you need to adjust your diet to obtain a proper balance of nutrients and things like fiber, etc.

Last but not least, more fiber often does NOT help people with Celiac and constipation. One very effective supplement you can try is magnesium. Your case does seem rather serious, so I'd suggest buying a bottle of pure magnesium oxide. Start with a small amount, and work up to a dose which works best for you. Mix 1/4 teaspoon in a full 8 ounce glass of orange or grapefruit juice, and drink it immediately. Or you may mix it in a full glass of water, and add one tablespoon of lemon juice, again drinking it immediately. Do not premix, as the magnesium tends to react with the juice over time. Afterward, drink 8 ounces of plain water every 30 minutes for at least 2-3 hours. If you do not feel any effect after 6-8 hours, take another dose. Increase the dosage by 1/4 teaspoon every 4-5 days if needed, but do not increase too quickly, as it can cause cramping until your intestines "catch up". Do not continue increasing unless it is helping, but you may need to work up to over 1000mg of magnesium before obtaining appreciable relief. Be certain to drink plenty of plain water every day, even if you do not feel particularly thirsty, as the magnesium draws water into the intestines.

[Chopper]

Sorry to hear your having trouble! With me, celiac was a silent disease, and still is when I'm accidentally glutened. It was discovered when my gallbladder went bad and a GI doctor did an endoscopy as part of the testing/diagnosis process. There is now way to know how well you're doing without another small intestine biopsy. Be sure to follow a gluten free lifestyle as best as you can because to celiacs, gluten is truly poison because it leads to other health problems, and can even trigger other autoimmune diseases. In order to not be overwhelmed too much at once, start small, like finding ways for the entire family to be gluten free most of the time for meals at home. Then move on to your skills at 'eating out', then move on to gluten free cosmetics and medicines. Or do it all at once it you can, but I found it to be too overwhelming. I had greater issues with constipation once I went on a low-fat, low-fiber diet for my gastroparesis. What has helped me is 250mg/day of magnesium and acidophilus/probiotics. Both are fairly inexpensive, natural and at your local drug store. I wish you good health!

[kraye80]

Thanks for the responses. It's really hard for me because I am a VERY picky eater so I did research on normal foods that are gluten free. It's just my daughter(8 yrs old) and I in the house so it can be tricky to make a meal so that's why I look more for the every day type of foods to make. My poor daughter probably gets sick of eating the same thing over and over again but I make alot of Taco's(since I am a picky eater tacos consist of chips(corn) meat and cheese) I try and stick to some sort of meat and potatoes as often as I can with corn. I make home made mac and cheese and she actually really likes that with the gluten free noodles but it is sooooo expensive making that for both of us. I have tried multiple bread recipes and bought a few different types of bread, lets just say I am giving up on that crap it's so gross. I have found a new love for snickers:-) I eat a salad every day for lunch with deli turkey and cheese with a boiled egg and western dressing(I found that it does not contain gluten) I will go to Taco Johns on Tuesday to grab my daughter some tacos so she still gets occasional fast food. Besides bread and fast food, the hardest part is not being able to eat good pizza. I've tried homemade crust and boughten crust and now Happy Joes and GodFathers pizza (local pizza chains) has it and I'm just not a fan. I just want the good stuff lol!

Regarding magnesium is this is a pill form or only liquid? I do take probiotics and phsyllium husk along with the amitiza!

[kraye80]

Sorry to hear your having trouble! With me, celiac was a silent disease, and still is when I'm accidentally glutened. It was discovered when my gallbladder went bad and a GI doctor did an endoscopy as part of the testing/diagnosis process. There is now way to know how well you're doing without another small intestine biopsy. Be sure to follow a gluten free lifestyle as best as you can because to celiacs, gluten is truly poison because it leads to other health problems, and can even trigger other autoimmune diseases. In order to not be overwhelmed too much at once, start small, like finding ways for the entire family to be gluten free most of the time for meals at home. Then move on to your skills at 'eating out', then move on to gluten free cosmetics and medicines. Or do it all at once it you can, but I found it to be too overwhelming. I had greater issues with constipation once I went on a low-fat, low-fiber diet for my gastroparesis. What has helped me is 250mg/day of magnesium and acidophilus/probiotics. Both are fairly inexpensive, natural and at your local drug store. I wish you good health!

I was wondering how did you find out you had gastroparesis? What kind of testing?

[Chopper]

I take the pill form, but there's liquid too.

[T.H.]

The deli meat could be a definite gluten contamination risk. Some luncheon meats contain gluten, but even if it doesn't, if it's been sliced at the deli counter, it's at risk for gluten cc. Kroger (which Smith's, Fry's, and Ralph's grocery stores are under, among others) has a recommendation on their own site that says if you are very sensitive, don't buy anything sliced at their deli counter because the cc risk is just too great, with the other foods being prepared around it. :-(

And I'll second, or is that third? , the 'constipation is SO a symptom of this disease.' The fact that your doc thinks it isn't is simply a sign of complete and utter ignorance of celiac disease research in the last 5-10 years. Not unusual, but not confidence inspiring, either.

I never knew it was an issue, because i didn't have it too badly before I went gluten free. Then I got medication, after about 6 months gluten free, that was gluten contaminated. I got SO constipated it was awful. Took quite a while to clear up, but it only got worse until I got rid of all the gluten. And it was more severe than it had been before I went off gluten, so truly - it is likely to be gluten related. Not necessarily, but likely.