Misdiagnosis And Symptoms

[JamesD]

Well I have been diagnosed with this disease as well roughly two years ago. For about six months I was on the strict diet. During that six months I did feel better but I'am not sure if it is because I'am healing or eating healthier. Let's rewind.

Now before this all I did is eat junk food, tons of it. I figured it was my diet causing all the problems. The problems included, acidy stomache, abdominal pain, gas pains, soreness and just plain sick. Well I noticed over a period of time that I have been having these problems. I also noticed the abdominal pain after I digested milk. So at the age of 27 I figured it was basically no good to have milk so I stopped using it even in other products like sour cream dip. Problems went away for the most part but still had some of the pains and gas. I would drink coffee and it would give me acidy stomache very badly. So I stopped using coffee along with the milk to put in it.

After awhile it got really bad. I started to eat better, cut down a fried foods, stay away from milk, coffee, soda and even some fruits with high acid like that of oranges. I finally went to the doctor and gave me Nexium, that didn't work. Next was Prevacid which made me run to the bathroom every 20 minutes and that didn't even work. He gave me one more kind which I cant remember and that didn't work. So I get a biopsy done and it comes back that I'am a celiac.

Like I stated above, I did it for six months and got very frustrated being that roughly 80% of food and related products had gluten in them. I wasn't going to eat corn and rice for my whole life and really didn't believe the doctor. So I went back to eating normal foods. Now I still stayed away from milk products and by products, coffee, caffeine, fried foods, OJ and some fruits. I actually stock up on antacids since I would frequently still get heartburn and indegestion. It worked it seems, so I'am thinking that the doctor misdiagnosed me. Everything is good so far I'am thinking other than I determined I'am lactose intolerant even with the lataid pills that didnt work as well. Fast forward to two weeks ago.

Now I'am 30. The past couple of weeks have been brutal. It all has come back, sever pains, acidy stomache and the rest. Now in the past year and a half I gained 14 lbs. Ate my same foods like I always do. To this day I don't think it is celiac disease. Spicy food bothers me. I told him this and told him about acidy foods like oranges. Even when I was on the six month diet, I still got heartburn and indegestion. So I made appointment with a different doctor next month in a different area for a second opinion.

Your thoughts and opinions would be greatly helpful.

Thanks again,

James

[penguin]

That sounds like me! I'm afraid of orange juice, it's sent me to the emergency room more than once.

When meds didn't work, my GI doc said I must have been taking the nexium wrong

Sorry, but there is no false positive for Celiac. If it came up positive on the biopsy, you've got some flattened villi. Flattened villi are only caused by celiac, and that's why you can't tolerate milk, either. Flat, inflamed villi can't secrete lactase, which is what breaks down lactose.

Only cure is a gluten-free diet for life. Sorry

[loraleena]

You need to go back on the diet. The previous post is correct. There are lots of gluten free options out there. Also fruits, veggies, meat ,potatoes are all gluten free. If you ignore this diagnosis you will only get sicker. Also antacids are very bad for you. Most people actually have to little acid not too much. Try a teaspoon of applecider vinegar before meals to help. Good luck.

[Rachel--24]

As previously posted a positive biopsy = Celiac.

While you were following the diet strictly you allowed yourself to heal...probably not 100% but you were well on your way. Going off the diet you may not have noticed symptoms returning right away but the damage was taking place and now you've probably started to feel the effects of it. The flattened villi dont happen overnight but slowly over time the damage is being done. I would recommend you get back on the diet and stay on it.

[Guest cassidy]

You may have reflux in addition to celiac. If you can't tolerate nexium & prevacid, you can try gaviscon. It is an over the counter antacid that doesn't give you d. Maybe the reflux is in response to eating gluten and after you have healed you won't have it anymore? I'm still hoping that is the case for me. There are lots of things you can eat, you just have to get through the frustration and anger and then you can start reading labels. Hope things get better.

[Lollie]

Everyone has given you good advice. I had all your symptoms.....tried everything for acid on the market. I didn't get any better until going gluten-free. I think you have Celiac Sorry. But if you are anything like me, once you give yourself some time to heal you will feel better. I don't take any antiacids any more, and I was on Prilosec/Nexium for 10 years before finding out I had Cekiac. Luckily, I didn't have much damage and was able to heal up and feel the effects of the gluten-free diet very quickly!

Here's a link I think you would find interesting about antiacids and Celiac.....

https://www.celiac.com/st_prod.html?p_prodi...1hH9H1U4Jsf65T-

I hope you give it another try!

-Lollie

[shimma]

My GI told me that flattened villi CAN be caused by things other than celiac disease, but if I were you, I would assume I had it unless I could prove otherwise. Other intestinal diseases and things like bacterial overgrowth can also cause damage to your intestines. I seem to be going through something similar to what you are - I wonder if I really have this disease, although, like you, I was diagnosed through a biopsy. I still have a lot of symptoms, even with a strict gluten-free diet. However, I'm not ready to throw it all away and go off the diet. The risks of letting this disease go untreated are too great.

[aikiducky]

Shimma, how long have you been gluten free? The most common mistake people make with celiac is thinking that they will get better quickly on the diet. It can take up to two - three years, that's the time scale we should be thinking about. Flattened vili are just not going to grow back overnight, and it takes time to replace all the nutrients that your body has been missing due to malabsorption. It's easy to loose faith in the diagnosis a few months into the diet when nothing seems to be improving, but that's how it works.

Pauliina

[tarnalberry]

So I get a biopsy done and it comes back that I'am a celiac.

Like I stated above, I did it for six months and got very frustrated being that roughly 80% of food and related products had gluten in them. I wasn't going to eat corn and rice for my whole life and really didn't believe the doctor.

You need to be 100% gluten free. Completely and totally. Symptoms vary WIDELY, and if you had a positive biopsy, you've got it.

You don't have to live on corn and rice. Take advantage of everything in the produce section (you can make great stir fries with sugar snap peas, carrots, bell peppers, jalapenos, and onions; fabulous salads with spinach, leaf lettuce, cucumber, tomato, and red onion; tasty marinated grilled vegetables with zucchini, sweet peppers, and mushrooms; delicious baked 'fries' with potatoes, sweet potatoes, turnips, carrots, and rutabegas; refreshing smoothies with pineapple, banana, orange, strawberries, and coconut; a light snack with apples and peanut butter; a delightful dessert with an assortment of melons; etc, etc.), the meat section (chicken/beef/turkey/pork/fish/shellfish for soups, stir fries, bbq, fajitas/tacos, casseroles, crock pots, roasts, etc., etc.), and the aisles with beans, and grains (all sorts of legumes and lentils for salads, soups, chili, mexican dishes, pastas, etc., and the wide assortment of gluten-free grains besides rice and corn like quinoa, millet, amaranth, buckwheat, teff, and wide rice). And don't forget seeds and nuts! And chocolate. :-)

Seriously, there is plenty of good, tasty, nourishing, worth sharing food to eat that's gluten-free and CF. I cook Gluten-free Casein-free and have friends/family over all the time, and I don't cook anything I wouldn't eat. They've always loved it. Don't let your own stubborness keep you sick! It's not healthy. :-)

[plantime]

You had a positive biopsy, you went on the diet, you started feeling better, you went off the diet, now you are sick again. Get back on the diet, give your body 3 years to heal, then stay on the diet!! By all means, if it will make you feel better, get a second opinion. Let us know what the second doc says. Make sure he does a biopsy, don't just talk to him.

[Celia the Celiac]

Did you know I've been taking Coral Calcium for a month now and it takes care of the acid in my stomache. I also recently read an article about what to take to speed up the healing process in Celiacs.

Fish oil, Probiotics (gluten fee of course) Colostrum and B12 shots since the intestine doesn't absorb it right now. I'm trying it. It's expensive but I'm doing it for the next two months. Just sick of all the bloating and gas. It's quite frankly embarrassing!