Diagnosed Six Weeks Ago And Still Feel Lousy; Definition Of "bloating"

[RedRoX]

Hi all,

As I mentioned in the post subject, I was recently diagnosed with Celiac disease. My diagnosis came via an IgA blood test. That was six weeks ago today.

Prior to my diagnosis, I would have periodic "episodes," where I would tell people, "my stomach just doesn't feel well." At the time, I was always reaching for an apple, because that seemed to settle things down. I had lived with this symptom as well as soft stools for many years, but about 9 weeks ago, the symptoms had gotten worse so I sought medical attention. It's difficult to believe, but I just figured that I was getting older, and that "indigestion" was a part of life - this is why I waited so long before visiting my doctor.

Three weeks before my diagnosis, I started to feel considerably worse. Just a general feeling of malaise, as well as a frequently upset stomach. I felt so bad that I stopped doing any exercise, even though I'm an avid cyclist and I strength train 2-3 days per week.

Following the diagnosis, I started a gluten free diet, and I haven't knowingly had so much as a single bite of gluten since that time. After about 2 weeks on the gluten-free diet, I started to feel a little better and I started exercising again. I felt, "OK" for the most part, having discomfort from time to time, until about 1.5 weeks ago. At that time, my stomach began bloating, I don't feel like eating (for fear of the way it will make me feel, and due to a diminished appetite), and my stomach feels like it's churning most of the time. I just don't feel well, and in fact, I've lost nearly 5 lb within the past 1.5 weeks. Needless to say, I'm not exercising at the moment; the whole situation is driving me nuts.

I did speak to my doctor last week. He ordered a liver panel, tested me for H. Pylori, and prescribed a PPI to reduce my stomach acidity. I've been on the PPI for four days and have realized no relief. Further, no OTC medications (tums, gas-x, pepto, etc.) seem to relieve my symptoms. In fact, they don't make a dent. I'm still waiting on the H. Pylori results.

So, my questions are: do these sound like celiac symptoms? I see much discussion of "bloating" or "abdominal bloating" on this board. Are people talking about bloating above or below the belly button? In my case, my bloating is well above my belly button, but below my rib cage - really in the upper gastrointestinal area. Is this kind of bloating typical for celiacs? It literally feels like my stomach just doesn't want to empty.

I guess my concern is that I know a significant number of Celiacs are asymptomatic, and I wonder if something else - something unrelated to the Celiac - is what is making me feel so bad. Or, if it is the celiac that's the underlying cause of my malaise, how long I should wait for an improvement before seeking further assistance or pushing my doctor for additional answers.

Any thoughts will be greatly appreciated. Thanks for your time.

[GlutenFreeManna]

Welcome to the board! I can't really answer the bloating questions but I thought that perhaps if you could give a general run down on what you have been eating we could make some suggestions. Some possible causes are: cross contamination issues, other food intolerances and difficult to digest foods. If you let us know what you eat and also what your cooking environment is like(is your kitchen gluten-free? Did you get a new toaster? Etc) we might be able to better help.

[eatmeat4good]

That is about the time the secondary food intolerances started to show up for me.

It seems to be common for other intolerances to surface as soon as gluten is well out of your system.

Upper abdominal bloating was common for me...

Intolerances can be dairy, soy, other grains, nightshades, fructose, and I'm sure my list is not complete.

You can keep a food diary and maybe be better able to tell what the offending food is.

Probiotics and digestive enzymes are helpful.

I've never done the food diary myself, but I see it recommended often, so thought I'd throw that out there.

It can be really frustrating when you think you are doing everything right regarding gluten, to then have other intolerances impede your progress.

Hang in there and re-examine everything for trace gluten just in case.

[hsmomof6]

Those were some of my symptoms before going gluten-free, but I haven't had them since the first couple of weeks on the gluten-free diet. Maybe CC somewhere? I have found that Align has helped me keep things more regular. I recently ran out and went a few days without it and I could definitely tell a difference. So, for now, it's part of my regular daily routine.

[RedRoX]

Welcome to the board! I can't really answer the bloating questions but I thought that perhaps if you could give a general run down on what you have been eating we could make some suggestions. Some possible causes are: cross contamination issues, other food intolerances and difficult to digest foods. If you let us know what you eat and also what your cooking environment is like(is your kitchen gluten-free? Did you get a new toaster? Etc) we might be able to better help.

Thanks for your willingness to help.

My kitchen is not gluten free, per se. I have done nothing special to it since my diagnosis six weeks ago, and prior to that time, I consumed a typical wheat based diet. I do eat gluten-free toast regularly, but have not replaced my old toaster.

For the past week and a half, I've been eating the following:

- gluten-free toast with jelly (I checked the jelly ingredients for hidden gluten, but found none)

- whey protein

- white rice

- grilled white fish

- fresh tomato salsa

- Thai soup made with fresh veggies, chicken, fish-based broth and rice noodles (I get this from a local restaurant - the owner has Celiac - all of their entrees are gluten-free)

- Almonds (only a few)

- plant-based digestive enzyme

- psyllium fiber supplement

- a couple of eggs (yesterday)

- organic apples

- bananas

Surprisingly, the eggs didn't seem to bother me. I don't eat any dairy products other than the whey, which my doctor tells me does not affect lactose intolerant people (I don't know if I'm lactose intolerant or not).

Prior to the past week and a half, I was eating a much wider variety of foods, including milk products, potatoes, gluten-free breakfast cereals, a few gluten-free treats (carrot cake, cookies), ostensibly gluten-free foods at local restaurants, lots of eggs, fish (all varieties), homemade gluten-free chili, quinoa, quinoa pasta, salad, homemade chicken soup, etc.

I started a food diary just yesterday in the hope that it will help.

Thanks again to everyone who replied to my post.

[kareng]

You are likely getting gluten from the toaster and any other things like a colander for draining pasta that was used with wheat. Until you really go gluten free, you really can't be certain if you have other foods causing problems, too.

[GlutenFreeManna]

Thanks for your willingness to help.

My kitchen is not gluten free, per se. I have done nothing special to it since my diagnosis six weeks ago, and prior to that time, I consumed a typical wheat based diet. I do eat gluten-free toast regularly, but have not replaced my old toaster.

For the past week and a half, I've been eating the following:

- gluten-free toast with jelly (I checked the jelly ingredients for hidden gluten, but found none)

- whey protein

- white rice

- grilled white fish

- fresh tomato salsa

- Thai soup made with fresh veggies, chicken, fish-based broth and rice noodles (I get this from a local restaurant - the owner has Celiac - all of their entrees are gluten-free)

- Almonds (only a few)

- plant-based digestive enzyme

- psyllium fiber supplement

- a couple of eggs (yesterday)

- organic apples

- bananas

Surprisingly, the eggs didn't seem to bother me. I don't eat any dairy products other than the whey, which my doctor tells me does not affect lactose intolerant people (I don't know if I'm lactose intolerant or not).

Prior to the past week and a half, I was eating a much wider variety of foods, including milk products, potatoes, gluten-free breakfast cereals, a few gluten-free treats (carrot cake, cookies), ostensibly gluten-free foods at local restaurants, lots of eggs, fish (all varieties), homemade gluten-free chili, quinoa, quinoa pasta, salad, homemade chicken soup, etc.

I started a food diary just yesterday in the hope that it will help.

Thanks again to everyone who replied to my post.

To start, replace your toaster. Then look at replacing any non-stick cooking pans--the scratches can harbor gluten, wooden spoons, wooden or plastic cutting boards and your pasta strainer. All these things are next to impossible to remove the gluten from and the very small amounts CAN keep you sick. Make sure your enzymes and other supplements are gluten-free--if they say gluten-free but contain wheat grass or barley grass they may not be safe. Also check any personal care products that come into contact with your hands or lips. Lotions, soaps, chapsticks, lip gloss, etc. All these things can be acidentally digested in small amounts and my keep you sick.

I would drop the whey protein powder if you are cutting out dairy. You could be so lactose intolerant that you even react to things labeled "lactose free" (which can actually have very low amount sof lactose) or you could be intolerant to the casein instead ot he lactose.

Finally, be careful about how often and where you eat out. I know you said the one place is knowledgeable about fixing gluten-free items, but not everywhere is and even the places with gluten-free menus can mess up. Make sure you are asking about preparation and making your needs for gluten-free food known everytime, not just assuming that something is safe. I'm not saying you're doing this but it's a common newbie mistake to just order a salad without croutons or steak and fries and assume they are safe. You may want to cut back on eating out or stop eating out completely until you feel better. That way when you do go out you know for sure when a restaurant made you sick and know whether you can safely eat there or not.

[MissBonnie]

all my symptoms are well above the belly buttn. im 3 months gluten free and still cant get out of bed so count yourself lucky you can

[MissBonnie]

doesnt whey protein contain gluten????

[kareng]

doesnt whey protein contain gluten????

Where would the gluten come from? Its milk!

[txplowgirl]

Dairy and gluten both causes bloating in the upper abdomen for me. Uuugghhh, sluggish feeling, nausea, burping, sometimes shooting pains. I also think that you still have gluten cross contamination plus you are newly diagnosed, so go easy or cut out the gluten free foods because they can problems first starting out. Best to be on a whole foods diet for a few weeks then slowly add the gluten-free items in. Just a thought. And welcome to the forum.

[Kim69]

I agree with all the posters above. Get a new toaster and new wooden utensils and cutting board that are labelled gluten-free. Also I have found that allocating half of the best bench space in the kitchen as gluten-free has really reduced my anxiety about cc.

I too have lots of pain both above and below the belly button. I am 1 yr post diagnosis and am still working out all my food intolerances. I too used to exercise a lot and really miss it.

I recently had an upper abdominal ultrasound and the tech was complaining that I had so much gas in me she couldn't get good images of my organs! Talk about how to make someone feel good.  after that episode which had me in tears, I got stricter on removing lactose from my diet.

Be patient, try the food diary, eliminate foods and see how you feel. Good luck!

[Kim69]

Also, get as many tests completed as you want to ( or can afford to).