New Here

[moonlitemama]

This is my first post, but I've been soaking in tons of info here for the last week or so. Thank you! Sorry, it's going to be a long post, I'm afraid, but I wanted to get it all down in one place and figure I might as well share. Thanks to anyone who reads it all!

I've been having "issues" since about November; trying to figure out what's wrong since about January/February. I have bouts of D for no apparent reason, loose stools most days when it's not actually D. Occasional C. Nausea, stomach/intestinal "icky" feeling most days. Lots of stomach & intestinal grumbling/gurgling.

I started by going to an internist. I told her my symptoms and she gave me a list of things she thought it could be and we worked at ruling each out. Her list included: lactose intolerance, ulcerative colitis/Crohn's, colon cancer, hyperthyroid, gluten intolerance, IBS. She did a blood draw for the hyperthyroid and Celiac testing; both came back negative. I went off dairy (but not hidden dairy) for a week and didn't notice a change, so she ruled out lactose intolerance. I had a colonoscopy in March to rule out colon cancer and colitis/Crohn's. Thank god I did because they were able to remove some precancerous polyps (which is crazy, since I'm only 32). But, they didn't come up with anything that explained my symptoms. The internist is at a loss for ideas now and ready to chalk it up to IBS (which I feel is a BS diagnosis). I had her run a parasite panel, which also came back negative. I haven't been back to her since.

So, I then started suspecting food intolerances. Due to the ingredients in items I ate right before a couple bad bouts, I suspected soy and then dairy. I cut them completely out of my diet for a month. Seemed to help a little, but not much.

I went to an allergist who ruled out a whole list of food allergens and suggested trying a complete elimination diet.

So, 2 weeks ago, I cut out gluten. (I also had my 3 children go gluten-free for a week as well, but that didn't last). And I've been limiting dairy, but seem to do ok w/ cheddar cheese. I'm making all my meals from scratch, however, there may be some CC due to my dh and 3 dcs still eating a full gluten diet.

For the first week and a half I was feeling much better. Most of my symptoms were gone. Still some gassiness & gurgling, but more energy and normal bms. Then Tuesday I had a small bit of ice cream. Since then, everything's back. I don't know if it was the ice cream or the LactAid I took before hand (anyone know if the Vanilla chewable ones have gluten?). Then Wednesday I accidentally licked two envelopes (out of habit). Thursday I had cheese twice (once cheddar, once mozzarella). So, I don't know what's thrown me, but as of a few hours ago, I still had D and wasn't feeling so well.

Anyone have any insight for me? I'm starting to wonder if I'm crazy thinking that gluten is the problem. I'm just getting desperate for an answer.

I went to a GI doc today. The only one in town. I was really hoping for something worthwhile. I was sorely disappointed. He had me go through my symptoms and what's been checked and said that it was IBS and we'd start treating it and see if that took care of it. When I asked what treatment involved he said a small dose of an antidepressant (Elavil or something like that?). I expressed dislike for the idea of going straight to trying a drug and he seemed quite put off by my questioning it. I asked about further testing for Celiac or about pursuing the diet for awhile longer. When I told him I had been off gluten for two weeks, but had a relapse in symptoms and what I thought had caused it, he scoffed and said "well, it's not lactose intolerance". As far as testing went, he said that Celiac was extremely rare and there was "a thousand to one odd that I would have it". I said that I had been reading a lot about it being as prevalent as 1 in 150 Americans. He said, "yeah, I've been reading that for the last 10 years, too, but I'm just not finding it - I have people come in all the time convinced they have it and their blood work and biopsies show they don't." The next step to test me would be a biopsy, which he tried to discourage for two reasons - first, because I'd have to go back on a "normal" diet for at least a month and second, because the colonoscopy would have looked at the small intestine (I was under the impression that it only checked the large intestine??).

I also asked him about being tested for malabsorbtion and he basically gave me the same guff. That he didn't see any point in testing before trying the drug route and that I'd have to go on a normal diet for at least a month.

I'm so frustrated and upset and confused right now. Should I try the drugs and see if they help? Should I stay gluten-free and see if things improve? Do I try Enterolabs? (they're just so pricey...)

Thanks, if you've read this far...

Raechel

[CarlaB]

Then Tuesday I had a small bit of ice cream. Since then, everything's back.

It sounds like you also might have a dairy problem. I'd go gluten and dairy free for a while (a couple months) and see what happens.

Did you learn anything from the elimination diet?

You mentioned possible cc ... that could also be causing your problems.

If you do the elimination diet, go off things you are having issues with and still don't get better, then post again so we can throw out more ideas ... but to start off with, you need to be 100% gluten-free and cut out the other foods that show up on the elimination diet.

[Lisa]

This is my first post, but I've been soaking in tons of info here for the last week or so. Thank you! Sorry, it's going to be a long post, I'm afraid, but I wanted to get it all down in one place and figure I might as well share. Thanks to anyone who reads it all!

I've been having "issues" since about November; trying to figure out what's wrong since about January/February. I have bouts of D for no apparent reason, loose stools most days when it's not actually D. Occasional C. Nausea, stomach/intestinal "icky" feeling most days. Lots of stomach & intestinal grumbling/gurgling.

I started by going to an internist. I told her my symptoms and she gave me a list of things she thought it could be and we worked at ruling each out. Her list included: lactose intolerance, ulcerative colitis/Crohn's, colon cancer, hyperthyroid, gluten intolerance, IBS. She did a blood draw for the hyperthyroid and Celiac testing; both came back negative. I went off dairy (but not hidden dairy) for a week and didn't notice a change, so she ruled out lactose intolerance. I had a colonoscopy in March to rule out colon cancer and colitis/Crohn's. Thank god I did because they were able to remove some precancerous polyps (which is crazy, since I'm only 32). But, they didn't come up with anything that explained my symptoms. The internist is at a loss for ideas now and ready to chalk it up to IBS (which I feel is a BS diagnosis). I had her run a parasite panel, which also came back negative. I haven't been back to her since.

So, I then started suspecting food intolerances. Due to the ingredients in items I ate right before a couple bad bouts, I suspected soy and then dairy. I cut them completely out of my diet for a month. Seemed to help a little, but not much.

I went to an allergist who ruled out a whole list of food allergens and suggested trying a complete elimination diet.

So, 2 weeks ago, I cut out gluten. (I also had my 3 children go gluten-free for a week as well, but that didn't last). And I've been limiting dairy, but seem to do ok w/ cheddar cheese. I'm making all my meals from scratch, however, there may be some CC due to my dh and 3 dcs still eating a full gluten diet.

For the first week and a half I was feeling much better. Most of my symptoms were gone. Still some gassiness & gurgling, but more energy and normal bms. Then Tuesday I had a small bit of ice cream. Since then, everything's back. I don't know if it was the ice cream or the LactAid I took before hand (anyone know if the Vanilla chewable ones have gluten?). Then Wednesday I accidentally licked two envelopes (out of habit). Thursday I had cheese twice (once cheddar, once mozzarella). So, I don't know what's thrown me, but as of a few hours ago, I still had D and wasn't feeling so well.

Anyone have any insight for me? I'm starting to wonder if I'm crazy thinking that gluten is the problem. I'm just getting desperate for an answer.

I went to a GI doc today. The only one in town. I was really hoping for something worthwhile. I was sorely disappointed. He had me go through my symptoms and what's been checked and said that it was IBS and we'd start treating it and see if that took care of it. When I asked what treatment involved he said a small dose of an antidepressant (Elavil or something like that?). I expressed dislike for the idea of going straight to trying a drug and he seemed quite put off by my questioning it. I asked about further testing for Celiac or about pursuing the diet for awhile longer. When I told him I had been off gluten for two weeks, but had a relapse in symptoms and what I thought had caused it, he scoffed and said "well, it's not lactose intolerance". As far as testing went, he said that Celiac was extremely rare and there was "a thousand to one odd that I would have it". I said that I had been reading a lot about it being as prevalent as 1 in 150 Americans. He said, "yeah, I've been reading that for the last 10 years, too, but I'm just not finding it - I have people come in all the time convinced they have it and their blood work and biopsies show they don't." The next step to test me would be a biopsy, which he tried to discourage for two reasons - first, because I'd have to go back on a "normal" diet for at least a month and second, because the colonoscopy would have looked at the small intestine (I was under the impression that it only checked the large intestine??).

I also asked him about being tested for malabsorbtion and he basically gave me the same guff. That he didn't see any point in testing before trying the drug route and that I'd have to go on a normal diet for at least a month.

I'm so frustrated and upset and confused right now. Should I try the drugs and see if they help? Should I stay gluten-free and see if things improve? Do I try Enterolabs? (they're just so pricey...)

Thanks, if you've read this far...

Raechel

Raechel:

Welcome to the Celiac Forum. You supplied us with a lot of information which will help us, help you if we are able.

Where to begin.....? You doctor is incorrect, 1-100 are diagnosed with celiac and the average time for diagnosis is still at ll years....tell ya something? IBS stands for "I be stump ted", meaning that doctors can find no significant reasons for symptoms. And they are not willing to test. Remember, there are no meds needed to go gluten free. Shall I say no more.

Most people who have the need to go gluten free, also go dairy free. According to what I understand, if you have blunted villi due to Celiac Disease, the lack of villi cannot deal with dairy and sometimes casine and your body will deal with this as an intolerance or sensitivity. (Ursa Major, is a master at this)

Some times we need to the the Master of us and learn what is right and listen to our bodies. You have seemed to have all the worried tests and have ruled them out.

Try the gluten free/dairy free diet for a month of so and see how you feel. If you need assistance with that we can help you. It's kinda difficult in the beginning but very do-able.

[Rosewynde]

First off, don't stress! Sounds like the doctor's have eliminated the REALLY bad problems. Take a few breaths of releif and move on ; D

I'd be tempted to say lactose as it sounds VERY familiar to my problems initially. Also some of your worst reactions seem to be with milk products. No matter what it is, don't believe IBS, according to my RN mom it's a standard catch all! I got told for years that I had IBS and it was just stress fouling up my bowels. The docs just couldn't figure out what else it could be. I got lucky and my last bout I got sent to a new GI doc that decided to test for Celiac Disease. I've tested positive now for the antibodies but negative in the biopsy. My real proof was in the diet, improvement within days of being off of gluten and dairy. I'm not back to 100% yet but I'm getting there.

Try an elimination diet and give it some time. I've heard that everyone's different. It can take some time for your body to recover, especially if you had trouble for a long while. It can also get set back by unintentional mistakes. Beware and read all ingredient lists and check out all your drugs because I found gluten and lactose in many of mine. Get used to all the special names that are used for things too. Watch for standard problems with cross contamination too like using butter, peanut butter, jelly, or mayonnaise that someone else has put a crummy knife into or using something that hasn't been washed throughly after someone else has used it for their stuff. Once your stomach is reactive it'll react severely to even the tiniest amounts.

Also, keep in mind it might be something other than gluten or milk (lactose). It could be corn, soy, or any number of other things. If your worried about that, maybe start cataloging what you eat when and when you have problems. It's a pain to do but it might help pin point the problem for you.

[mftnchn]

Yes I agree, try the diet 100% including dealing with cross contamination as much as you can. The initial improvement is encouraging, and the ups and downs seem common during recovery.

You might consider Enterolab to help you confirm the gluten issue.

[SunnyDyRain]

I just want to add the difference between Lactose and Casiens. Scince your doctor tested for Lactose Intolerance and it came back negitive, your problem may be with Casiens. Lactose is milk fat, Casien is a milk protein. Even stuff marked "Non-dairy" has casiens in it (cool whip and coffee mate are two big non-dairy items with casiens.)

So if you have problems with dairy, even though you are eating dairy free, you may still be getting casiens and they are causing some problems.

[moonlitemama]

Thank you, all, for the warm welcome!

Thanks for all the reassurance to stick with the diet. I'm feeling better today, as well, which makes me agree I should stick with it.

I think I'm doing quite well with the gluten-free. Baking all my own stuff & have been lucky enough to have good results with everything I've made thus far. I do need to scrub down all the cupboards and buy a few new things, which hopefully I can do next week.

My kitchen is VERY tiny, though, and shared with DH and 3 young children...none of whom are conscious of their messes. I try to minimize cc by making my foods right on my plate. Any other suggestions?

As far as the dairy goes, does anyone have advice as to whether I need to bother even cutting out dairy that's in stuff or might it be enough to just cut out the obvious - cheese, ice cream, milk, yogurt? Most of that's been out of my diet for the last month and a half, but I have tried cheese and ice cream a few times. I have not been worrying about the "hidden" dairy as it was not seeming to bother me when I added it back at the start of June.

I'm guessing it's not a problem with casein, at this point, but I'll keep it in mind. What names does it go by, though, so I can watch for it?

Thank you!

Raechel

[confusedks]

Rachel,

In my experience at first, I eliminated all dairy and "dairy-free" things, and it did nothing! I noticed no improvements and was feeling quite frustrated. Then I just went crazy and thought that it didn't matter if I had ice cream, etc. Then I really was desperate and decided to go Gluten and Dairy/Casein Free. I have been strictly (except the odd mistake) for about 7 weeks. I have noticed a huge improvement with all my GI symptoms. What I did was went gluten-free d/cf for 2 weeks and then one night couldn't handle it and ate a piece of milk chocolate and OMG the next day I felt HORRIBLE!!! I never knew how much dairy was affecting me. For me, I needed to see how I felt, because it wasn't convincing enough for me to hear it from my mom, doctor, etc. Also, I went to a naturopath and she told me that it can take up to 6 weeks to "detox" from foods our bodies don't like. Hang in there!

Kassandra

[Karen B.]

Raechel, a gastro doc told me that the enzyme that helps you digest diary is manufactured at the tip of the villi that are damaged, so most Celiacs have a problem with dairy at first until they heal up. Some people are dairy intolerant and no matter how long they are on a gluten free diet, they still won't be able to eat dairy comfortably. I was lucky, I was one of the first sort and was able to eat dairy after a couple of months. My sister, however, remains dairy intolerant.

You do have to be eating gluten for the tests to work properly. It's similar to the way they have to see your body reacts to sugar to test for diabetes. You can find more information about Celiac testing here: https://www.celiac.com/st_sresults.html?p_keyword=testing

We have a completely gluten-free kitchen in our house and that was my hubby's idea. He didn't want me to have to worry about it and that way, he doesn't have to worry about making me sick by forgetting something. If he starts craving something with gluten, he'll go elsewhere to get it and brush his teeth before he kisses me afterward (yes, it really can be that sensitive). Staying gluten-free around 3 small children that are not strikes me as quite a challenge but since I don't have children, I'll let someone else speak to that issue. But I will observe that it wouldn't be unusual for at least one of your kids to have problems with gluten as well, it is genetic.

Depression is not unusual for someone that is undiagnosed or recently diagnosed. I've been gluten free several years but when I get a gluten hit, I can expect a few days of an emotional rollercoaster. Before my Celiac diagnosis, my primary doc tried to give me a prescription of Prozac and it caused the first (and thankfully, only) panic attack I've ever experienced -- horrible reaction. Since then, I'm not willing to take anything stronger than St. John's Wort. But that's me, I'm just not willing to go through something like that again.

Most doctors really don't know how to treat health issues that don't require pills. I'd consider contacting your local Celiac group and finding a gastro doc that actually knows something current about Celiac. For one, it requires an endoscopy to diagnose Celiac by biopsy, not a colonoscopy. If a doctor doesn't know how to test for Celiac, he won't find many patients with it, will he? It sounds like it would be worth driving to the next town to get a gastro doc that is up-to-date.

Local Groups:

https://www.celiac.com/st_prod.html?p_prodi...-49107235539.b0

I've found our local group to be a valuable resource of info on good doctors, where to find gluten-free food and solid support for the issue we deal with. Online groups are great but someone in your are can tell you who has the best price on Tinkyada pasta.

[corinne]

I just want to add the difference between Lactose and Casiens. Scince your doctor tested for Lactose Intolerance and it came back negitive, your problem may be with Casiens. Lactose is milk fat, Casien is a milk protein.

Just a minor correction: lactose is a sugar not a fat.