Now What?!?

[mesmerize]

I'm seriously at my wits end here. I've been gluten free for a year, since February 2006. After a few months off of that, I started having more problems -- heart flutters, chest pains, skin problems, fatigue, etc. -- so in August 2006 I decided to experiment with quitting dairy (after several people here recommended trying that). ALL those symptoms disappeared almost immediately. I was sad to give up dairy, but happy to feel normal again.

So now I've been completely Gluten-free Casein-free for several months. I felt great up until about a month ago. Then I started having many of the same symptoms that I had before I quit dairy! Heart flutters, chest pains, skin breaking out, etc. So THEN I decided to try quitting soy too, since that seems to be another very common intolerance that a lot of people on here have. I've now been off of soy for a week, and there has been absolutely no change in my symptoms. I know a week isn't very long, but when I quit dairy everything cleared up so suddenly... I guess I was expecting the same thing with soy IF it was actually causing me problems to begin with.

I just don't know where to turn next. I don't think soy is what's causing these symptoms, but I have no idea what else it could be. I had a wonderful doctor in South Carolina who always seemed to have all the answers, but I can't see her anymore since I relocated back to Pennsylvania.

I'm just so sick of this!! It's like, when I first quit gluten, and then later dairy, I felt GREAT for a couple months and was so happy... then I start having problems again and I just feel like my body is turning against itself AGAIN.

What do I do now??

Sara

[CarlaB]

If you've tried eliminating other foods, I'd start looking for what else could be causing those symptoms. It might be another disease other than celiac at work here.

[2kids4me]

I agree, you should be checked fo something else underlying your symptoms - have they screened you for Lupus?

We had similar issues with Kathryn, go gluten free, she feels great for while, then eliminate lactose - improved again..then the same symtpoms return in cycles and after discussion with pediatrician- they are investigating Lupus... after they ruled out autoimmune hepatitis

Sandy

[CarlaB]

Both of you might want to look at Lyme Disease. It's much more common than the CDC reports due to under-reporting by doctors. The symptoms are almost identical to celiac. In fact, my Lyme doc tests everyone for celiac to rule it out. Many people with Lyme feel somewhat better on the gluten-free diet.

IGeneX is the reputable lab for Lyme testing. They ONLY do Lyme testing and their tests are more sensitive than other labs who only do a little Lyme testing. Www.IGeneX.com.

You can look at symptoms at Open Original Shared Link. Open Original Shared Link is another good website.

You will find that doctors will laugh at you for even suggesting Lyme. It's very hard to get diagnosed because of the political climate surrounding the disease. In my opinion, since the treatment of it is so expensive for the insurance companies they discourage diagnosis (my meds are about $3000 per month for at least a year or two!). The doctors don't seem to be trained on it at all (sound familiar?).

[ArtGirl]

For me, corn was the culprit. I was getting better gluten-free and CF, but still having GI symptoms. Eliminating all corn and corn derivatives made all the difference for me. I also started taking L-Glutamine (an amino acid that helps reduce inflammation in the GI tract). I don't have anymore GI problems as long as I don't get "corned" or glutened! (The casein causes other symptoms).

Sometimes it takes real detective work to sort it all out. If you can get the test run, it would probably be a good idea to check for Lyme's.

[mesmerize]

Hmm... interesting ideas. I've never tried eliminating corn, although I guess I probably do eat a lot of it. Maybe I should give that a try.

As for Lyme disease... wow, never thought of that. I just did a little reading online about it and I'm already overwhelmed. The really icky thing is that I don't even have health insurance right now because I just moved and I'm in between jobs. I can't even imagine what it would cost to treat that without insurance! I guess it's something I should keep in mind though.

Just when I think I have things figured out, it's something new...

[CarlaB]

I can't even imagine what it would cost to treat that without insurance! I guess it's something I should keep in mind though.

My meds are $3000 per month!!!! You CAN do it cheaper than that, but at the very least it's going to be $500 monthly. I would suggest getting a job with insurance prior to testing ... you wouldn't want to start out with a pre-existing condition.

IF you think you have many of the symptoms, there are natural treatments you can do in the meantime ... that's what I did until I could get in with my Lyme doc.

Be sure to ask at Lymenet, or here even (there are at least 6 of us on this board with Lyme), if you want a doctor recommendation.

Keep us posted on how it goes with the corn! I hear that's harder to eliminate than gluten. Good luck!

[mesmerize]

My meds are $3000 per month!!!! You CAN do it cheaper than that, but at the very least it's going to be $500 monthly. I would suggest getting a job with insurance prior to testing ... you wouldn't want to start out with a pre-existing condition.

IF you think you have many of the symptoms, there are natural treatments you can do in the meantime ... that's what I did until I could get in with my Lyme doc.

Be sure to ask at Lymenet, or here even (there are at least 6 of us on this board with Lyme), if you want a doctor recommendation.

Keep us posted on how it goes with the corn! I hear that's harder to eliminate than gluten. Good luck!

I think for now I'll just try to do some research on the Lyme stuff, keep it in mind until I have insurance.

And I can imagine corn is harder to eliminate than gluten... I swear, after trying to eliminate dairy and especially SOY, gluten-free seems easy! There are so many things you can substitute for wheat, but it's a whole different story with dairy & soy... I quickly learned that nothing on earth can substitute for real cheese

~Sara~

[wowzer]

What about having your thyroid checked? That can be a symtom.

[mesmerize]

What about having your thyroid checked? That can be a symtom.

Yea... I've been through all the thyroid stuff before. I was hyperthyroid in Nov. 2004 (diagnosed with Graves), got overmedicated by my idiot endocrinologist and ended up being hypo for quite a while after that. My levels finally stabilized somewhat and they've stayed about the same for quite a while.

I don't think I'm hypo right now because when that happens my heart rate always slows down to about 60 or less. If anything, I thought I might be a little hyper right now because my heart rate has been a bit faster than normal... but when I was hyper before I had a bunch of other symptoms like tremors, which I don't have now at all.

[vbeighley]

Have you tried eliminating citric acid and msg? I am gluten free, but my stepdaughter was having headaches and occasional nausea accompanied by bouts of exhaustion. We found a doc here in Minneapolis (William Walsh) who wrote a book on food allergies. I have learned so much in the last week it is pitiful. Citric acid that is used as a preservative in food is not derived from citrus fruit, but rather fermented from several different types of mold - Aspergillus niger and Candida albicans(yeast) - making yogurt of any kind, as well as most cheeses off limits, even those that are soy based. The msg is also a byproduct of the fermentation cycle that is found in these foods. Since two of her biggest reactions on the intradermal tests were to these two molds, it makes sense. After just 4 days off of this stuff, she is feeling much better. We will see if it lasts. Since she drank a lot of Pepsi every day, and it is high in citric acid, that just made it all worse. Seems even soy sauce that is listed as msg free has a certain amount in it that appears during the fermentation cycle.

[burdee]

Everybody's reply 'advice' seems to reflect their OWN experience or what they heard from friends. That just shows how we may ALL have celiac disease and/or gluten intolerance, but we all have different sensitivities to additional foods. Rather than guessing what foods bother you or trying 'elimination' diets based on advice of friends, find a naturopath who will actually test you with a blood test for additional allergies AND a stool test for bacterial imbalance (too little good bacteria or too much bad ones), yeast and parasites. I prefer the ELISA food allergy test which measures both immediate IgE and delayed IgG reactions to foods you normally eat. If you've abstained from gluten and dairy for awhile those shouldn't show a high reaction, UNLESS you're getting accidentally contaminated by either. Skin prick tests do NOT show IgG reactions, because we don't put food under our skin when we eat. Stool tests can accurately show candida (yeast) overgrowth, for which you will need antifungal treatment as well as dietary changes. Parasites are more common that people think.

I can understand your frustration with food sensitivities beyond gluten. I agree that gluten abstinenance seems simple when compared with multiple other allergies. I started with Enterolab tests which indicated gluten and milk sensitivity and the celiac disease gene. Then I noticed soy caused problems. So I eliminated soy, but didn't test because Elab didn't offer soy sensitivity tests at that time. So while I abstained from those 3 food sources, I always wondered about soy and wasn't as motivated to avoid it. However I STILL had symptoms 2 years later. So I took the ELISA blood test which showed 2 more allergies (egg and cane sugar). I also did the Elab test for soy, egg and yeast, which showed a positive soy reaction. Even after avoiding all 5 of those food sources, I STILL had symptoms (mostly gastrointestinal). I took another ELISA test for additional foods not covered in the main 100 food test. That additional test showed no new allergies.

So now I focus on seriously avoiding any foods which are not declared free of my 5 allergens. With so many restrictions, I sometimes get lax about products which list 'safe' ingredients, but may not be processed in a safe environment with dedicated lines. Nevertheless KNOWING my 5 allergies prevents me from guessing about what additional sensitivities I might have. Knowing makes me check everything I ate before I had a 'reaction' to determine whether every food was absolutely free of those 5 allergy sources.

BURDEE