Feeling Worse And Wose... Need Help

[Kate35]

Hello,

I have been gluten free for 10 months now and I was feeling better for awhile, most of the digestive symptoms gone, but lately I feel like I have been getting worse and worse. It started in Deecember when I realized that the vitamins that I started taking contained wheat (Centrum Chewables, please be careful!!!!), but I quickly discontinued them and most of my symptoms seemed to subside in a week or two, but then on and off I'd get sick for no apparent reason. We never go out, our whole house is completely gluten free, I even bought some new pots and cooking utencils... I cook almost everything from scartch and I don't use anything packaged unless it is specifically labeled as gluten free. I don' use much of even gluten free packaged food either, I stick to the whole food diet. I am really not sure what I am doing wrong... For example, on friday we had some hot dogs (Hebrew National because they are gluten free according to multiple sources) and I felt horrible all night and most of Saturday morning. Then I did not eat anything on Saturday other than baked potatoes and white rice and felt ok (not great) but then I made an apple pie on Sunday from Bob's Red Mill all purpose flour (which i made many times before and was totally fine) and had such a horrible night that my hubby wanted to take me to the hospital. Don't remember last time I was in such a pain post diagnosis... Then I was not eating yesterday and today (skipped Valentine reservations...) and was okay today until I ate one (!!!) meatball that I myself made from scratch (there is literally nothing there I even made my own tomato sauce!)and 2 hours later all my digestive symptoms returned with the new intensity...

I am so scared... what could it be? Has it happened to any of you ever? Shall I go to the doctor? Shall I have another gastroscopy? Last one was 10 mo ago when they diagnosed celiac by accident...

Thank you for your time!

[dilettantesteph]

I got sensitive to lower levels of gluten as time went on. I became unable to eat things like hot dogs and flour mixes. I also have problems with tomatoes from the store though I can eat them from my garden. I stick to a whole foods diet. I try different things only one per week so that I can tell if it bothers me. Best wishes.

[ravenwoodglass]

I don't tolerate the Bob's flour because the garbanzo flour, sorghum flour, and fava flour are not something my system can handle. You might want to try a flour without all the bean flours like Tom Sawyer or Pamela's baking mix and see if that is better tolerated. While the hot dog's are gluten free they may just be too greasy for your system right now. It can be tough when we are healing and I hope you are feeling better soon.

[over50]

Hello,

I have been gluten free for 10 months now and I was feeling better for awhile, most of the digestive symptoms gone, but lately I feel like I have been getting worse and worse. It started in Deecember when I realized that the vitamins that I started taking contained wheat (Centrum Chewables, please be careful!!!!), but I quickly discontinued them and most of my symptoms seemed to subside in a week or two, but then on and off I'd get sick for no apparent reason. We never go out, our whole house is completely gluten free, I even bought some new pots and cooking utencils... I cook almost everything from scartch and I don't use anything packaged unless it is specifically labeled as gluten free. I don' use much of even gluten free packaged food either, I stick to the whole food diet. I am really not sure what I am doing wrong... For example, on friday we had some hot dogs (Hebrew National because they are gluten free according to multiple sources) and I felt horrible all night and most of Saturday morning. Then I did not eat anything on Saturday other than baked potatoes and white rice and felt ok (not great) but then I made an apple pie on Sunday from Bob's Red Mill all purpose flour (which i made many times before and was totally fine) and had such a horrible night that my hubby wanted to take me to the hospital. Don't remember last time I was in such a pain post diagnosis... Then I was not eating yesterday and today (skipped Valentine reservations...) and was okay today until I ate one (!!!) meatball that I myself made from scratch (there is literally nothing there I even made my own tomato sauce!)and 2 hours later all my digestive symptoms returned with the new intensity...

I am so scared... what could it be? Has it happened to any of you ever? Shall I go to the doctor? Shall I have another gastroscopy? Last one was 10 mo ago when they diagnosed celiac by accident...

Thank you for your time!

over50

I have been gluten-free now since June 2010, and also have found out that other foods bother me, which they didn't seem to before. Perhaps it is that the body having dealt with one intolerance then starts dealing with the others of which we were not aware before. I have had days of feeling really unwell alternating with days where I feel fairly reasonable. I envy those people who feel better after a few weeks. I'm still trying to get a handle on my weight as I've only gained 3 pounds in all this time. I suspect that various foods will be off my list for a while, such as raspberries (way too acidic) and also strawberries, tomatoes, maybe soy, though haven't confirmed that yet, chocolate (groan, sigh...) I also cannot handle dairy so that is out too. Your response sounds pretty much par for the course, though indeed each person with Celiac is dealing with different symptoms from each other. I would stay with foods that agree with you, keep cutting out those that do not and avoid as someone else suggested foods that could be too greasy. Our systems are now very delicate and it seems that many substances can upset that fine balance. Take care.

[Takala]

You are probably either getting cross contaminated or have a secondary problem you have not figured out yet.

Once you figure out where it's coming from, you will be okay.

You may want to go ahead and list what you normally eat every day so it can be trouble shooted.

I don't do hot dogs unless they are a gluten free labeled product, like an organic sausage made with turkey, hot dogs are very, very tough on the system, and I am on the high end of being able to eat most things as long as I avoid the few things that don't sit correctly. An example of this is flax meal for me, which is a very common ingredient in commercial gluten free baking. Flax this, flax that, bleah ! Do you know how long it took me to figure this out ? What a nuisance !

Bob's all purpose is garbanzo, potato, tapioca, sorghum, fava, manufactured in a facility that also uses nuts and soy.

Some people really do NOT tolerate fava beans in garfava flour, the garbanzo- fava blend, and I would also try avoiding that, along with soy, and see what happens. Garbanzos (chickpea) are nice. Fava, bleah ! Pamela's has dairy and may not be a good substitute for the people avoiding all dairy.

Look what is in the Hebrew National Hot Dog-

Beef, Water, Contains 2% or Less of: Salt, Sodium Lactate, Spice, Hydrolyzed Soy Protein, Paprika, Sodium Diacetate, Garlic Powder, Sodium Erythorbate, Sodium Nitrite, Flavorings.

Would somebody please show me where in the Old Testament there is hydrolyzed soy protein ?! bleah !

What did you do with the pie crust shortening ? Soy butter ?

You are going to white starches when you feel ill, and you may be better off going to a really lower carb thing like just fruits, nuts, and vegetables and clear tea until you get a handle on it.

The meatball story. I was in a place that advertised as having gluten free deli options, but by my quiz of the counter help I ascertained that they were nice but clueless and I was going to get cross contaminated big time, so I opted for a pre packaged gluten-free item out of the freezer display case. There was a loaf of bread from a good gluten-free bakery I had eaten at before, that I knew was okay, after studying the label, so we got that and a pint of Coconut ice cream. But they had tubs of house made meatballs made with another commercial gluten-free bread item, just labeled as "bread crumbs brand "x," I know from the label ( I bought a loaf just for the label and had my spouse eat it) I will not be good with, at all, and combined that with the cross contamination problem and it would have been a wreck.

It's not the ground meat, it is the OTHER stuff that goes in it.

You could also be sensitive to guar or xanthan gums, but there are ways to work around that. But try ditching the soy and fava first.

[Kate35]

Thank you all so much for your suggestions! Your support means so much to me! I am on the elimination diet now, will see what happens...

Enjoy the holiday weekend!

[zus888]

What kind of pain are you experiencing? I had a gallbladder issue and it was AWFUL! I'm just wondering if you should go to your doc to check up on other issues. Gallbladder problems should be easy to rule out with an ultrasound.