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Diagnosed with Celiac Disease and Still Sick

Hello Everyone!  I was diagnosed with celiac disease about six months ago or so.  I was doing well.  I felt a lot better right away.  Then in August I messed up a number of times by eating out.  Now I have been very strict.  Although still a learning curve with hidden gluten/cross contamination.  My number went from 37 to 10. 

 My thing is I have been getting very nauseous for about a month now.  My GI doc thinks it is because I still have gluten in my system (the number being 10 still).  Prior to being diagnosed nausea wasn't the problem.  It was bloating, cramps,

portion of the digestive tract between the stomach and the anus.'); return false">bowel issues, migraines (side note: migraines are gone!).  But now I am nauseous daily.  I had bloodwork and an ultrasound done for gall stones, liver and pancreas and all was fine.  It doesn't seem to matter what I eat.  It is usually after lunch, and I normally eat salad, meat and veggies, banana and almonds.   Today I had no lunch and had coffee with milk and I suffering bad with nausea, sweating and headaches.  I don't seem to have trouble with milk but maybe I do.

I am just wondering what other celiacs would have to say.  I am committed to doing this, I just wish I would start feeling better. Any advice is appreciated.

As always, Celiac.com welcomes your comments (see below).


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35 Responses:

 
P. Smith

said this on
07 Oct 2009 12:40:23 PM PST
My wife and I are starting a gluten free diet because she is symptomatic of celiac disease. Though not diagnosed, yet, she exhibits all symptoms of the disorder. Our first purchase of gluten free food nearly bankrupted us! E-gads this type of food is expensive and outrageous! I have yet to see a blog on the cost of this type of food! Any suggestions???

 
L.tyler

said this on
13 Oct 2009 1:39:17 PM PST
No suggestions on the cost. If you find something you want to try, only buy one first. some things look really good so you buy 3 or 4 only to get them home and they were horrible. Good luck

 
Jenny

said this on
15 Oct 2009 8:27:10 AM PST
It is so expensive! I absolutely feel your pain, I'm a college student and it is TOUGH. My best suggestions are; 1) get a bigger pantry; talk with the owners of your local food co-op, usually you can get a discount for buying items in bulk and they will alert you when items are going on sale - buy 'em up! Look for any food buying clubs in your area, you might find many more people in your same situation. 2) make time for baking. It is time consuming but if you buy individual flours in bulk it is much cheaper to make your own bread. There's a great recipe book written by the Culinary Institute of America called Gluten-Free Baking with recipes you would think are 'normal' bread products. The research and information is VERY helpful. Make it a new adventure to learn to bake gluten-free, it actually is fun and SO rewarding. There's a recipe for sandwich bread that makes 3 loaves at once and freezes very well - that saves time! 3) Check out gluten-free product reviews on the internet before buying something you haven't tried before. Ask co-op employees too because they often have taste testings of newly stocked products. 4) Buy more spices to make cheap yet hearty dishes (beans and rice) interesting, flavorful, and ever-changing. Take leftovers from one night and turn it into something completely different.
This is my first time writing on here, but I would like to start blogging and the cost of gluten-free food is one of my main concerns. I hope those few tips help you and your wife - don't get discouraged just get creative. Good luck.

 
Gluten-free C

said this on
16 Oct 2009 7:55:15 PM PST
Hi! I was just diagnosed a couple of weeks ago with celiac disease. I am 46 with two teens and a husband to feed. Yes, it is very expensive. I have found the best way to navigate so far is to try to eat less carbs, and eat more of everything else that is naturally gluten-free. I have bought some crackers and bread, but not much, because of the price. I am trying to live a normal, gluten-free life, within a smaller grocery budget. I have tried two restaurants for gluten-free meals, of which were average-tasting meals. I'd rather eat at home than eat expensive, gluten-free meals, average in taste. Salads with gluten-free dressings (read the labels and call when in doubt), gluten-free soups from Trader Joes, homemade chili, chicken and rice dishes, Boars Head lunch meats and cheeses, Rice and Corn Chex cereals, rice pudding, nuts, seeds, Trader Joe's soy and flaxseed chips, etc. Have been my staples to begin this new chapter. It is difficult at first, but I have decided it just takes time, education, and a little more effort to navigate the grocery store. When in doubt, eat meat, rice or potatoes, and veggies for a meal, and go from there.

 
Didianne

said this on
02 Nov 2009 5:38:36 PM PST
First, while I'm not celiac, my father and brothers are. As my mother is in poor health, I'm doing most of their cooking. Gluten-free cooking doesn't have to be expensive. PREPARED foods and mixes? Might as well invest in gold. But the ingredients themselves are fairly cheap. Rice is your best friend. While her poor gut heals,(and that takes a long time!) rice is the easiest to digest. And there are a LOT of great gluten-free recipes out there. Get a grain grinder, so it will be dedicated to gluten-free. This is for rice and some of your beans; they're cheaper if you self-grind. Find a good TRUSTWORTHY health food store for your bulk flours. (make sure that they understand the dedicated area concept--lots of them don't get it!) Corn flour is wonderful, and instead of Xanthan gum, try Guar gum first. I've got some wonderful recipes that I found on the web. In recipes, instead of potato starch, use cornstarch. Instead of the more expensive potato flour, use 100% mashed potato flakes, just give them a whirl in your new, dedicated gluten-free blender. (Yes, some of your appliances should be new, and dedicated gluten-free! They don't have to be expensive, top of the line; $15 at Wal-Mart ones work just fine.) My staples are corn, white beans and rice flours. I occasionally use gelatin and guar gum, plus egg whites in breads, as binders. And many things can be made with mashed potatoes and milk (or yogurt) instead of wheat thickeners.
Oriental food stores have a sweet rice flour that isn't gritty, and a lot of things that are naturally gluten-free. I use rice flour and corn flour mixed together as breading for oven-baked chicken, chops, fish, etc.

Also, a lot of the bouillon powders are actually gluten-free, you just have to know all of gluten's "evil incarnations".

Good luck!

 
Michele Estes

said this on
31 Dec 2009 5:34:15 AM PST
As an Integrative Nutrition and Wellness practitioner, I work with many people who are gluten intolerant (myself included). I direct my clients to the foods that we are so deficient in in our culture; whole foods - especially green leafy vegetables. What I am getting at is that the processed gluten free foods are, yes, expensive, but they are not at all healthy and do not promote healing of the intestines. So, to help direct you to less expensive naturally gluten free food - look to all varieties of green leafy vegetables, ALL other vegetables, fruits, beans, whole non gluten whole grains (rice, millet, quinoa, buckwheat, amaranth...) eggs, dairy (if tolerated), clean animal proteins, nuts & seeds... Make this 90% of your diet & then save the other 10% for the processed gluten free foods.

 
Carol

said this on
07 Jan 2010 11:13:51 AM PST
Thanks for much for this comment! I'm finding that real, whole foods are really helping me heal and taste great - much better that the processed gluten-free foods I've tried.

 
Ginny Lewber

said this on
17 Aug 2010 7:56:20 PM PST
Order the Gluten-Free Shopping guide book by Cecelia's Market Place. I have had 2 blood tests in the last year and no gluten in my diet while eating many of the products listed in the book that are not labeled gluten free. I do buy some gluten free products from Bob's Red Mill and I bought a bread machine and make my own bread form his mix and it is so much cheaper.

 
Linda

said this on
09 Oct 2009 11:44:14 AM PST
I'm over 50 and in addition to the celiac I have discovered other foods that don't agree with me. Even when eating gluten-free products I ended up feeling nauseous like you. It took a while but I traced it to potato flour. Many of the gluten-free cookies I like and Kettle brand potato chips have this in common. Potato flour is made from russet potatoes and Kettle company makes their potato chips from russet potatoes. Potato starch is made from a different kind of potatoes and I don't have a problem with it. I don't feel nauseous any more but it has limited my diet even more. I feel that potato flour is almost as common in gluten-free foods and wheat is in regular foods.

 
Heather

said this on
11 Oct 2009 6:16:58 AM PST
My sisters and I all have celiac. My sister was diagnosed with celiac because she had extreme nausea (as well as some other symptoms). She was ultimately tested for celiac - but along the way, they discovered that she had an inner ear infection that was left over from a case of strep... and was causing the nausea. Might be worth double-checking that it's not an infection (vs a food issue).

 
maxine o'boy

said this on
11 Oct 2009 1:31:38 PM PST
Don't give up, you are not alone. I was diagnosed with celiac in April this year. At that time, it I rarely had a good day (to be able to move and cope with every day life normally). Now days, because I find it impossible to eat in for every meal, I still find that at least 1 or 2 days a week I feel drained have bloating and have sharp stabbing pains on my left hand side. But even as I lie hear, I think of the 4 years I spent before this with the toilet as my constant friend, the terrible sweats and pain I experienced constantly only to be told it was IBS. Nothing could be as bad as that.

I too feel that I seem to be even more sensitive. Now even the slightest amount of wheat will make me feel awful. Just keep up the good work of watching what you eat.

Tip:- I always fall back on this soup when I am sickest. A sweet potato cooked with a gluten free stock cube and water. When soft blitz up. Crumble some feta cheese and sprinkle with fresh coriander. It is easy for my stomach to tolerate because it is a soup, it tastes great and it seems to energize me with the vitamins.

Good luck.

 
Lori Z

said this on
11 Oct 2009 2:00:36 PM PST
Have you ever had a HIDA scan done on your gallbladder? Last year I started feeling nauseous almost all the time. I had ultrasounds done, but it didn't show anything. Someone suggested that I should get a HIDA scan done because that is the only test that can test the function of the gallbladder. So I asked my doctor and he ordered the test. The results were that my gallbladder was not functioning properly and needed to have my gallbladder taken out. My celiac diagnosis came earlier this year after still having problems. After having been on the gluten free diet for about 6 months, I am not having the constant nausea or pain. Once in a while I eat something, usually while eating out, that contains gluten and have to deal with the pain, but now I know where it is coming from and it is easier to handle now since my gallbladder removal almost a year ago. Hope you find the answer soon.

 
Jenny

said this on
15 Oct 2009 8:33:57 AM PST
I am undiagnosed (but positive I have Celiacs) and I also have a strong reaction to lactose. Do you find that after you drink milk, eat cheese, or butter that your mouth produces a lot more mucous? Or your breathing becomes more difficult and more shallow? These are common signs of food allergies and maybe your discomfort is coming from another allergy (MANY are linked with gluten sensitivity). You mentioned you ate almonds as well - pay close attention next time you eat these things and write down exactly how your body changes 1/2 - 4 hours after eating. Gluten affects our immune systems, so any reaction you may be having might also be temporary - your system just might not be able to handle any extra stress right now. You might want to consider a short cleansing diet to get yourself back on track. Remember to be nice to your body, treat it well and it will return the favor. You'll figure it out.

 
Jessie

said this on
15 Oct 2009 6:31:19 PM PST
Are you on any medications for other issues? I was on birth control pills for years and years without problems. However, I went back on them for a short time about the same time I was diagnosed with celiac. I had a horrible reaction to them- night sweats, hypoglycemia, light-headedness- and these were essentially the same pills I had been on for years! I happened to go off them for another reason and everything cleared up. Something about the celiac makes me overly sensitive to medication.

 
Jenny

said this on
22 Oct 2009 9:33:12 AM PST
I was diagnosed with celiac 7 months ago. I brought my number down from 104 down to 5. Thought everything was fine, then I started getting sick, just last week. I' have decided that it is due to milk because I have all the symptoms of being lactose intolerant. I asked my nurse why now, why not months ago when I was diagnosed. She said that as the healing process begins, the body will still pass milk products through since the body is not totally healed yet and cannot absorb milk very well, so that is why milk didn't bother me before. But now that my body is healing, it is trying to absorb milk and cannot. This may be the same situation that you are going through, stay away from the milk for now or use a Lactaid, that is my recommendation. Hope this is helpful information.

 
pin cole

said this on
10 Dec 2009 9:17:28 PM PST
Does that mean that once you heal you should be able to absorb the lactose again??

 
b

said this on
10 Jun 2013 5:13:07 AM PST
Not always - your villi in your digestive tract can have issues with fructose and lactose if they are super sensitive. I was tested for fructose but thank goodness, nada. So what I mean is, if you have celiac disease, you could be sensitive to fruit and milk.

 
Cheryl

said this on
28 Oct 2009 8:12:12 PM PST
I found that xanthan gum, in almost all celiac approved bread, cookies, salad dressings and sauces, was the ingredient that made me feel nauseous and bloated. Try avoiding it for a week and see if it helps. I found a great cookbook, "You are What You Eat", that is all natural (mostly vegetarian) and can be used by celiacs with minor adjustments. I'm hypoglycemic and lactose intolerant too and these recipes are great. Hope you feel better soon-we know what you're going through.

 
Sam

said this on
03 Nov 2009 5:01:29 PM PST
Another thing to have checked is candida. Candida infections can happen anywhere: we hear of thrush in the throat and yeast infections in ladies' lower areas, but candida can infect other places. I was shocked to find that I had a severe candida infection all along my esophagus and upper stomach (thanks to an inhaled corticosteroid asthma medicine), which they discovered during upper endoscopy and duodenal biopsy. Once I took a long course of oral diflucan my nausea ended. The nausea came any time I ate something the candida liked - which is anything with starch, sugars. I was gluten free but not candida free!

 
Milind K

said this on
29 May 2010 11:02:24 PM PST
You need to get serum vitamin B12 level checked. I had to take vitamin injections (7daily, now weekly). After couple of days I felt very energetic & my bowel seemed less volatile. I had B12 rich diet (dairy, fish meat) before but still had low B12 due to absorption issues.

 
Darci Hill

said this on
04 Nov 2009 9:47:46 AM PST
You could have bacterial overgrowth. My doctor gave me flagyl which is an antibiotic and then it was followed up with prednisone.
I had about the same symptoms and then developed really bad nausea that worsened over time. You would have to have biopsies taken again. Talk to your doctor before it gets unbearable. I hope that you feel better.

 
Liz

said this on
07 Nov 2009 8:52:01 AM PST
I'm a self-diagnosed Celiac. In 2007, after 7 years of symptoms and no diagnosis, I did an herbal cleanse and started drinking aloe vera juice. After completing cleanse, ninety-five percent of my symptoms were gone. I agree that you may even have a candida overgrowth condition. Have you tried taking a Probiotic? Anytime you take antibiotics, it kills off your good yeast, allowing bad yeast to take over and kill of good bacteria. Sets your whole body off balance.

 
Didianne

said this on
09 Nov 2009 3:43:35 PM PST
It could be a lot of things, candida being just one of them. Remember, your gut is supposed to be all fuzzy inside with little fingers, and by the time you're diagnosed, the fingers have been worn away. It takes a LOT of time to heal, and a lot of the things you ate thinking to make yourself healthy, were actually doing more damage. While your body is trying to heal, anything rough (almond skins, potato skins, fibrous things, etc.) can, according to a dietitian I consulted, be hard on the new cilia trying to grow.

She recommended easy-to-digest things that have very few ingredients. Steamed veggies that are between crunchy and soft, (except for carrots and tomatoes, which release more nutrients when they're cooked thoroughly) She recommended against things with more than 4 ingredients or 3 syllables! She also mentioned that when babies are being introduced to new foods, you're supposed to start them on only one new thing a week. That way, they're less likely to become allergic or sensitive to new things, and it's easier to pinpoint if they are. Think of your gut as a new baby trying to grow, and don't feed it grown-up foods for awhile.

She advised my family to go on a "rice-plus" diet (rice plus steamed carrots, rice plus a bit of chicken, rice and fish and a veggie, etc.) for awhile, and take GF vitamins, with extra B-12. Extra iron if you're a woman of childbearing age, since celiac gives you an absorption problem.

Have your blood checked for levels of everything, and then slowly add wholesome things, one at a time. Build up a repertoire of foods, vegetables and simple meats, that won't cause you to become ill, then when you have 20 or so foods, you can start to vary and add. Even spices, especially the woody ones, can be rough on your gut at first. Garlic is usually okay cooked in foods, and then cinnamon (later, because it's a fibrous food) These are very healthy and "anti-candida" and extremely antibacterial.

Check ANYTHING you take, such as a probiotic, for GF; some still contain bad things in the binders. And think twice before you eat anything sugar-free, especially gum and candies. The sorbitol, mannitol, etc. can have a profound laxitive effect, which can make you think you're having more gut problems!

 
Nancy

said this on
17 Nov 2009 9:25:42 AM PST
Maybe you just have a candida infection. Celiac and candida have the same symptoms. Google - candida vs celiac.

 
Didianne

said this on
21 Nov 2009 11:30:58 AM PST
Something else you might want to consider--almost all of the celiacs I know have absorption problems, and many have thinning hair. I just looked at the ingredients list on my purple shampoo bottle, and it lists WHEAT PROTEIN as a hair thickener. If you use a hair thickening shampoo, you may be getting gluten in the shower. This wouldn't be a problem for me, but for my family members, even giving me a hug might expose them to gluten. So I'm going to have to find a different shampoo!

 
Harley

said this on
05 Feb 2010 8:06:45 AM PST
Gluten will only affect you if you digest it, so unless you're eating the shampoo you should be fine. It's only if you are allergic to wheat/gluten that you would have a reaction outside of ingesting it.
Celiac disease is NOT an allergy

 
Whitney

said this on
20 Oct 2011 12:27:27 AM PST
This is not true for everyone. Gluten can be absorbed into the skin and still affects those with celiac.

 
b

said this on
10 Jun 2013 5:09:38 AM PST
Actually, if you have a gluten allergy, not celiac, you could have outside symptoms like a rash or throat swelling. Plus, if you have celiac disease, you can get head rashes or mouth sores from tooth paste or wheezing. The list goes on.

 
doreen eddowes

said this on
27 Nov 2009 6:10:04 AM PST
I was diagnosed with celiac disease six months ago still don't feel good. It's the tiredness that is awful...I watch every thing I eat and read every label on all foods its a big change in life style and eating out is a nightmare.

 
Jean

said this on
16 Dec 2009 6:07:41 AM PST
I was diagnosed with celiac disease almost 2 years ago. I am pretty diligent about what I eat. Occasionally there is a sneaky ingredient in something that I later find was a form of gluten. I still feel yucky some days. Very tired and the brain fog is horrible. I can totally relate.

 
Didianne

said this on
03 Dec 2009 1:07:12 PM PST
My "Sprue Crew" had the same reactions. There's the sense that you're weak, and ill, that it's overwhelming, and overpowering, and the sense that you have to be a Food Nazi, and eat strange things, and it's going to be for the rest of your earthly life! They each had the same reactions, at different times. First, there was the relief that they weren't crazy, then the narrowing down of the things they could eat, then the "baby-food" part of the diet, then there was the cheating, like a diabetic sneaking a bag of candy! Now, they just have a healthy diet, without some of the things they'd like.

The exhaustion is sometimes as much emotional as physical; you start to feel as though you've got a fatal illness. And you have to come to terms with grieving for the foods you love that make you ill. The holidays were especially hard, because the foods represent the emotions of the seasons! (Now we have pumpkin flan instead of pumpkin pie, and the new tradition is to crack the candy on it with a spoon.) And then there's the replacements and substitutions that (good as they can be) are just not the same.

Recognize, though, that the gluten free stuff IS real food, not just a pathetic replacement for real food. A LOT of regular foods are naturally Gluten-Free. Or can be with very minor modification.

Give yourself permission to be angry with your body. It's NOT fair, it's NOT fun, and it is not going to be the same. But it WILL be good again. You do have to be vigilant, and might have to look hard to find fun things to do, and you might have to educate the restaurants where you go to eat. Most larger cities have restaurants with GF on the menu; vegetarian restaurants are usually really sympathetic to your needs, although you have to watch their ingredients.

Make SURE that you get the rest your body needs; it's completely rebuilding an entire segment of your digestive tract. Spoil yourself with a warm bath, candles, a fun movie, things that don't have to involve food.

Instead of focusing on what you can't eat, load yourself up with things that are excessively healthy. (Butternut soup, salads, stew, baked apples, steamed broccoli with garlic butter--what's not to love about healthy eating?? And the more things you make yourself instead of buying already prepared, the more healthily you can eat.) Build from a platform of nutritious foods, as close to fresh and simple as possible.

You can get through this, and you can enjoy your life. Once you get a handle on the eating thing, you can begin to look at the rest of your life, and find a way to make your patch of the world better. That's when your focus turns out from yourself, and you get on with your life.

It might take you another year to get through the emotional process of dealing with this. I've seen the same stages in my diabetic friend as in my Sprue Crew, and you can have a good life; Celiac has to rule your diet, but it doesn't have to rule your life!

Good luck!

 
S Allen

said this on
09 Dec 2009 8:25:36 AM PST
You don't say how old you are. If in your late 30's - late 40's the symptoms you mention could be due to hormone imbalance, for example eostrogen dominance or fibroids. Mention it to your GP and she what he/she says. I had very similar symptoms and was diagnosed with fibroids.

 
M. Grace

said this on
21 Dec 2009 8:51:17 PM PST
I have been celiac for about 8 years and now my son is going through it. He was on the diet for about 2 years, which included some cheating I would imagine. He wasn't feeling well lately so we had some more work at the doctor and he has been diagnosed with possible Hemochromatosis. If you google this with celiac there is a link. It is too much iron in your blood and celiac tends to mask it because your iron levels are low. The symptoms are pretty close to those of celiac and the literature states that it is more common that we think, just like celiac. I have read some studies from England that showed that when people are diagnosed with celiac and go on the diet, Hemochromatosis shows itself. My son is not confirmed at this point so we will see what happens.

 
Didianne

said this on
01 Jan 2010 12:54:39 PM PST
Hemochromatosis is a foundational problem for so many OTHER problems--if it's diagnosed positively, you need to know that there are multi-vitamins that contain no iron. (look for "men's health", and "mature adult" types.) But with celiac, it's a balancing act, since the absorption problems are so serious. Check B-12, since I've heard that a lack can lead to loose iron in the body--there has to be enough B-12 for the iron to actually be used--otherwise, you get "rust", but not healthy red blood cells. Check with a registered dietitian who has experience with BOTH celiac and hemochromatosis.

Sometimes even the best doctors don't understand quite enough about nutritional problems--they're focused on trying to keep people from dying,(or at least getting any worse) they're overworked, and if you have only ONE foot in the grave, they really have to move on to the next sick patient. I use my dietitian and pharmacist quite a lot, since they're front-line on foods and medicines, and the really good ones will think of your problem as a mystery to be solved. Not that they're not busy, but celiac issues don't necessarily follow over to the next patient for a doctor--but to a dietician and a pharmacist, what they learn from you might help the very next guy in line.

The next thing you need to convince yourself is that CELIAC FOOD DOESN'T HAVE TO BE BORING!! Vigilance is necessary, but there's a whole world of flavors that don't have gluten. Once you get on the road to healing, there's a massive variety of really yummy, interesting, healthy (and just yummy-but-really
UNhealthy) stuff to eat.

Today is my weekly cookfest for my sprue crew--a big pan of shepherd's pie topped with roast garlic mashed potatoes, a tortilla pie with cheese on top, and a pork loin roast with baby carrots and wilted spinach on the side. Not a gluten molecule within yards of it. Dessert is flan with nutmeg, jewel-krispie treats (get the multi-colored ones with no malt--they come in a big bag in our area), and ginger pears in chocolate sauce. Bananas Foster Cream Pie for Sunday dinner. (Corn Chex, butter and 1 TBSP brown sugar all crushed up for the pie shell) Chocolate-covered cornflakes with almond slivers. WAY more veggies than meat, more green than sweet. But use flavor and variety so that you don't get bored.

Oh, and my only "chef" experience is that I worked for McD in college, and like to watch the food network. Took a bread class from a master bread maker for a month, years ago. That's it.

You can do this. Probably better than most, because your health depends on the level of your dedication.!

 
b

said this on
10 Jun 2013 5:04:33 AM PST
I have had this exact problem. I was diagnosed when I was 13 and after being off of gluten for bout 6-8 months, I was good. Then I started to get very sick and nauseous with nothing staying down. I lost quite a bit of weight. Headaches, cramps, bloating, nauseous, sick all the time. But after 3 months of pain, it got worse. It was so bad that I was screaming in agony. I had such severe adominal pain the doctor took blood tests to see if I had gluten in my system - nope. Also, I got an ultrasound but it came back negative. I am still hurting - not as severe. I am being more strict with milk and beef and seasoning. Also, I have found that if you have more than one banana a day you get cramps.




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