Anyone Find Out Something Else Was Wrong, Too?

[glutenfreeinminnesota]

My posts are always so long...I just try to be detailed. Thanks to anyone who reads this and has advice!

I still can't believe I lived so long with my bathroom issues I had before getting diagnosed, and that's why I am trying to figure this out NOW. After finding out I had Celiac Disease, and went gluten-free, I couldn't believe how much better I felt! I was diagnosed Nov 2009, and have been secretly glutened a few times, but have always come back strong and back to normal. Well, in the last couple weeks or so, I feel as though I am getting glutened every day. I have been only eating at home and being super careful. I cook everything myself, so there's really no chance of cross contamination as I am OCD with cleaning my kitchen nowadays. Headaches have been occuring on a daily basis for a few weeks now, bathroom visits at least 3 times a day, sometimes 8 or more. Not really having the big D, but having urgency to go and pain to go with it. Every time I go, it's very loose. And I am so freaking tired! Drinking tons of water, constantly, as to ward of dehydration.

I feel like I did before I was diagnosed, afraid to go out somewhere, and always having to know where the bathroom is. Stressing about it doesn't help at all, but I am popping the Imodium and Tylenol every few days as I HAVE to leave my house to work. That can't be very good for my body either...

Could I have another food intolerance suddenly? I have also heard when you have one auto immune disease, you are more likely to get more. My mom was diagnosed with Addison's Disease well over ten years ago, and now just a couple months ago my dad was diagnosed with Lupus...so now I am worried I have some other intestinal auto immune disease, since obviously auto immune diseases run in my family.

Should I check in with my doctor???

[GFreeMO]

I'm sorry that you are not feeling well! I have been at this for 2 years. All of a sudden, I can't have casein/dairy anymore. It makes me as sick as gluten did. So yes, it is VERY possible to start reacting to a new food. Other people here have has similar things happen with soy or corn. I would start there and eliminate those 3 and stick with whole foods. Nothing processed like gluten free packaged foods. I would start there!

Feel better

[glutenfreeinminnesota]

I'm sorry that you are not feeling well! I have been at this for 2 years. All of a sudden, I can't have casein/dairy anymore. It makes me as sick as gluten did. So yes, it is VERY possible to start reacting to a new food. Other people here have has similar things happen with soy or corn. I would start there and eliminate those 3 and stick with whole foods. Nothing processed like gluten free packaged foods. I would start there!

Feel better

Thanks!! Glad to know I am not alone. I hate the thought of cutting anything else out...but before I was diagnosed I couldn't imagine cutting out gluten, yet here I am very confident about eating and cooking gluten-free. Are there blood tests my regular doctor could do to see if I have other food intolerance? Of course I am going out of state this weekend...so it may be hard to start cutting out other things immediately. I will try it when I get back.

[GFreeMO]

Thanks!! Glad to know I am not alone. I hate the thought of cutting anything else out...but before I was diagnosed I couldn't imagine cutting out gluten, yet here I am very confident about eating and cooking gluten-free. Are there blood tests my regular doctor could do to see if I have other food intolerance? Of course I am going out of state this weekend...so it may be hard to start cutting out other things immediately. I will try it when I get back.

There is a test for casein. I am not sure if there is a test for corn or soy. I think you would need an allergist for those. If I were you, when I got back home, I would cut out all dairy, soy and corn for 2 weeks and see how you feel. If you are better great, if not, go from there. I can tell you this though. I was eating tons of cheese and ice cream all summer and all of a sudden, it makes me really REALLY sick. I think soy can cause similar issues. I know that soy makes a lot of people here very sick.

[captaincrab55]

By all means, check with your GI... One could have an issue with H PYLORI too... There is a blood test for that...

[Marilyn R]

Count me in on the getting really sick from soy. And dairy. I'm able to tolerate dairy now, but I understand from other posts that dairy can be a fleeting thing (good today, bad tomorrow.)

I've been tested for a slew of other things by a number of specialists. There are times when my blood work shows up positive for other diseases. (Not cancer, but mixed connective tissue disease, sarcidosis, diabetes so far.)

I think (and I could be wrong) that in each instance I had consumed an alternative grain or oat before the day before or day of the blood draww. (Quinoa or certified gluten-free oats.)

I finally learned to ask the doctor to redraw my blood before I'd see another specialist (co-pay is $50.) 90% of the the doctors looked at me like I had a tree growing out of my forehead, but they'd agree in the end because I'm stubborn. I don't do oats or quinoa anymore, or soy. I'm currently enjoying dairy but understand it may be short term. I'm very careful, we have am almost totally gluten-free kitchen and home. (My compadre brings gluten containing items home in snap shut disposable containers, and my 11 year old dog isn't gluten-free, but I don't feed her, and she isn't allowed to kiss me anymore.

I hope you figure out what's bugging you, and that you have a good trip.

[Newbee]

I'm interested in this topic too. Maybe I'm too impatient but I'm on week 6 of being gluten free and I don't feel better yet. So wondering if there might something else that may be making my symptoms continue.

[love2travel]

It's strange but I did not feel sick from gluten at all. Have been gluten-free now for six months and the last month suddenly have been quite ill and have determined I cannot tolerate lactose (hopefully this is temporary). Who knows? I may have other intolerances as well...

[adab8ca]

I'm interested in this topic too. Maybe I'm too impatient but I'm on week 6 of being gluten free and I don't feel better yet. So wondering if there might something else that may be making my symptoms continue.

I don't have a lot to contribute to the other intolerances except that I hope you find out what it is and soon...That is horrendous.

Newbee, 6 weeks isn't a long time at all. You could have been sick for years and not really known it. Give yourself time. Some people feel better quickly. Many many more I suspect struggle.

Good luck!

[Newbee]

Yeah, I suspect I've had celiac most of my life and I've only gotten diagnosed now at age 37. My doctor seems to think I should be completely healed in 6 months. I'm not so sure about that. I saw him a couple of weeks ago and told him I wasn't feeling better yet but that didn't seem to affect his oppinion. I guess I'm afraid I'm not doing enough, either getting contaminated somehow or I wonder if there could be another intolerance. Or maybe I should just settle down. It is hard as family/friends ask me every week if I'm feeling better and I always say no. I've even taken to writing down everything I eat every day and recording how many times I go poo. Thought maybe it would help me figure out something but not so far.

[love2travel]

Yeah, I suspect I've had celiac most of my life and I've only gotten diagnosed now at age 37. My doctor seems to think I should be completely healed in 6 months. I'm not so sure about that. I saw him a couple of weeks ago and told him I wasn't feeling better yet but that didn't seem to affect his oppinion. I guess I'm afraid I'm not doing enough, either getting contaminated somehow or I wonder if there could be another intolerance. Or maybe I should just settle down. It is hard as family/friends ask me every week if I'm feeling better and I always say no. I've even taken to writing down everything I eat every day and recording how many times I go poo. Thought maybe it would help me figure out something but not so far.

I was told by my dietitian and doctor not to expect to be fully healed for 2-5 years! Six months seems awfully short to me.

[Newbee]

Wow, 2-5 years?! Is that for your blood tests to come back normal? I think that's how my doc is defining 'healed'. So besides feeling bad lately, have you been able to tell much difference in the 6 months of being gluten free?

[love2travel]

Wow, 2-5 years?! Is that for your blood tests to come back normal? I think that's how my doc is defining 'healed'. So besides feeling bad lately, have you been able to tell much difference in the 6 months of being gluten free?

No - not for bloodwork but for the gut to be healed to the point of a regular person's gut. My bloodwork just came back and my numbers went from off-the-charts-high to negative in five months only! But that is just an indication there is no gluten left. My gut is sensitive and there is still much healing to be done (which I have found with this new dumb lactose intolerance).

Besides feeling icky lately I have noticed very little difference. Slightly less brain fog but I have fibromyalgia besides and there is also something called fibro fog. Aside from that no difference. I really hope my fibro improves as it is downright debilitating; my insomnia is so bad that I get one good sleep per week - hope that improves, too!

But I am not keeping track of days or weeks or months as far as complete healing and not worrying about things happening within timeframes - that would drive me to distraction. However long it takes for my gut to heal is how long it is meant to take. I am just doing my very best in the meantime!

[T.H.]

Admittedly, you might be developing a new intolerance, but honestly, if this has popped up rather quickly, I would take a look at your food supply, first.

You haven't changed anything, but the companies and stores you buy food from might have.

Do you buy anything processed that you eat frequently? Any new bottles/packages/containers of something that you eat frequently? A contaminated batch with a spice or oil, something you eat a lot of, could be the issue. I ran into that once with an oil that was processed on a line that processed wheat germ oil.

Or something in the processing itself could have changed. Maybe a new guy at the meat counter is messier when he coats meat with the flour, so it's poofing into the air more and contaminating the other meat. Maybe the grinder for the ground meat is now also grinding up sausage that contains wheat (I actually got sick from this for a couple months before I figured it out). Maybe the company has changed facilities, or added a new gluten product to the same line the gluten-free food is on.

Just, with such a sudden onset like this, I would suspect a product change or an illness. Along with checking with the doc, it might be worth checking out all your processed foods to see if there's been any changes.

[Newbee]

No - not for bloodwork but for the gut to be healed to the point of a regular person's gut. My bloodwork just came back and my numbers went from off-the-charts-high to negative in five months only! But that is just an indication there is no gluten left. My gut is sensitive and there is still much healing to be done (which I have found with this new dumb lactose intolerance).

Besides feeling icky lately I have noticed very little difference. Slightly less brain fog but I have fibromyalgia besides and there is also something called fibro fog. Aside from that no difference. I really hope my fibro improves as it is downright debilitating; my insomnia is so bad that I get one good sleep per week - hope that improves, too!

But I am not keeping track of days or weeks or months as far as complete healing and not worrying about things happening within timeframes - that would drive me to distraction. However long it takes for my gut to heal is how long it is meant to take. I am just doing my very best in the meantime!

Thanks for sharing your experience with this. It is helpful. I'm glad your bloodwork is normal, too bad you are not feeling better. I hope things improve for you soon! I've heard so many people say they felt better within days or weeks of stopping gluten that I thought that was the norm. I think I'm going to ask family to stop asking me if I'm feeling better. I just end up feeling worse cause I think I should feel better but don't. I keep telling them all I can do is what I'm doing.

[glutenfreeinminnesota]

Wow, thank you everyone!! Lots to think about. My cousin is a dietitian who happens to specialize in Celiac, weird huh? Maybe I will speak with her and see what she says. I just want to feel good! Tired of this crap....literally...

[mushroom]

I've heard so many people say they felt better within days or weeks of stopping gluten that I thought that was the norm. I think I'm going to ask family to stop asking me if I'm feeling better. I just end up feeling worse cause I think I should feel better but don't. I keep telling them all I can do is what I'm doing.

Just tell anyone who asks that these things take a while . Everyone heals at a different rate, and any doctor who tells you you will be healed by a certain time doesn't know what he's talking about. They are talking about averages they read in a book. Really, they should know better. If you are familiar with the Bell curve you know that most people are bunched in the middle somewhere, but the range is wide, and you can fall anywhere on the curve. I have found with celiac especially that you cannot base what is happening to you by comparing it with what happened to someone else.

[lucia]

I was told by my dietitian and doctor not to expect to be fully healed for 2-5 years! Six months seems awfully short to me.

It's a relief to read this. I've been gluten free for 1 and 1/2 years now, and I know my body is not 100% healthy yet. I have started wondering if there's something else wrong (another autoimmune condition?), because the information I see out there all says if you don't get better than it must be something else too. Even Dr. Peter Green's book from the Celiac Center, as well as my doctor at the Celiac Center. But I am getting better; it's just taking a long time. I had symptoms for a long time - at least, 5 years - before I got really sick with this. It does make sense that it would take a long time to heal. Thanks, lovetotravel.

[love2travel]

It's a relief to read this. I've been gluten free for 1 and 1/2 years now, and I know my body is not 100% healthy yet. I have started wondering if there's something else wrong (another autoimmune condition?), because the information I see out there all says if you don't get better than it must be something else too. Even Dr. Peter Green's book from the Celiac Center, as well as my doctor at the Celiac Center. But I am getting better; it's just taking a long time. I had symptoms for a long time - at least, 5 years - before I got really sick with this. It does make sense that it would take a long time to heal. Thanks, lovetotravel.

You're welcome. It just makes sense to me that it could take quite a long time because most of us have likely had celiac or gluten intolerance for ages and ages! So, I am just giving my body all the time that it needs without rushing it. Of course my doctor and dietitian may not know everything there is to know about it but they seem very knowledgable and aware (and want to learn more) - better than most I have heard about. Just saw my doctor again today and was impressed with his knowledge.

[Newbee]

Has anyone read this article that notes that people with celiac disease are not healing all the way even after years to recover? The last time I saw my doctor I printed him a copy of this as I mentioned it during our first appointment and he had no idea what I'm talking about. He looked it over and focused on the part that mentions maybe further endoscopy is needed. I thought he should know people are not necessarily healing. A little scary I think. But what can you do?

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[Marilyn R]

It really does take time. And there will be hurdles like new food intolerances. Not everyone will agree, but it may pay to visit am allergist for food allergies. (Skin prick testing.) I was totally shocked to learn that I had a 4 on a scale of 1-5 on turkey, clams, pecans (ingredient in a gluten-free/SF/DF bar I was eating regularly) and egg yolk. I didn't worry as much about the 3's, just tried to rotate them.

I'm ready to re-visit the allergist. I think (but don't know) that some of those allergies have changed or diminished.

Your autoimmune system is hyperactice right now. The good news is that you won't catch a cold or the flu. The bad news is that your (T-Cell) soldiers want to kill any protein that appears like gluten. You have upset your warriors by eliminating the enemy, and they're still poised to fight.

They may not like the protein in corn or nightshade vegetables either.

You're about 20 years younger than me, and I didn't go gluten-free until a 1 1/2 years ago. It makes logical sense that you will recover more quickly and have less damage than I did. But this isn't a logical disease. It confounds good physicians.

If you've been minding your P's & Q's about CC and H&B products and strictly gluten-free, I absolutely recommend that you look into food allergy testing. I wish you well, I don't know if it's time that it takes to heal or other food issues but I empathize with your frustration.

For me, it's been a journey, not a quick road trip. Hope you have better luck!

[rustycat]

Sometimes gluten is only part of the puzzle.

My list of foods to avoid is now huge, but I'm only 1 year gluten free and I'm hoping that, with time, I will be able to tolerate more foods. I miss fruits the most - peeled pears are about the only ones I can eat without a reaction.

Good luck in your quest for answers. Detective work seems to be a very important part of our healing.

[dilettantesteph]

My son and I were diagnosed at the same time. We both found that we got sensitive to lower levels of gluten as time went on. Either that or our food got more contaminated as time went on. LOL We had to cut out more and more processed foods.

As the gluten free market grows, I would guess that gluten free food manufacturers are making more and more. They probably have to find more suppliers of their starting materials. They may have to buy more equipment and new facilities. Some of them may have cc problems. That might cause you to start having problems even if you are eating the exact same items.

[mommida]

Here are a few of my jumbled thoughts...

Go back to the doctor and keep a food journal.

Some reactions can last 12 days (eosinophils,so if your don't have a journal you will never be able to back track nearly 2 weeks to find the trigger food.

There are many vitamin and nutrient defiencies for a Celiac to recover from. From the articles and life experience I agree with 2-5 years for recovery.

There is now a longer list of foods I can't eat (lobster, spinach, raisins, and eggs = vomit/"D"). Bean flours kill my stomach.

My son was never able to eat carrots without throwing up. Then after gluten free for 2 years he can eat carrots. (ccoked or raw started with baby food)

I was watching Mystery Diagnoses (waiting for the Celiac episode) and it was about Pernicious anemia. Symptoms presented with "D" and during the show I thought for sure it was Celiac. By the way there is a connection between Celiac and Pernicious anemia.

[shadowicewolf]

Just a tidbit of info, your body changes every 7 years (in terms of allergies, not sure about intolerences), because of cells dying off and replacing and such. What you might not have been allergic to before, you could become allergic too. The opposite goes as well.