How Do I Decide Which Diagnosis To Pursue?

[mythreesuns]

Celiac, fibromyalgia, ulcerative colitis, Chrone's, Lupus, Lyme, RA.......

I fit the profiles for every one of these diseases, how do I choose which to focus on first!?

Luckily, the rheumatologist I was referred to can help with the fibro, the Lupus, Lyme, and RA, and the gastro is following up on the Chrone's and colitis. But sheesh...at this point I've passed ALL the tests so I'm still a medical mystery!

[AndreaB]

They all, except possibly Lyme, have associations with gluten. Go gluten free and see how many of your symptoms resolve themselves. If you already are gluten free, in everything, then I don't know.

I have also read associations of Lupus with aspartame. It seems like I've read something else that was associated with Fibromyalgia but I can't think of it.

[mythreesuns]

  AndreaB said:

Go gluten free and see how many of your symptoms resolve themselves. If you already are gluten free, in everything, then I don't know.

Thanks, the joint pain was what finally pushed me over the edge to go gluten-free. I've been doing that for about 6 wks or so, but the pain is just getting worse and worse. The D is better though. Not gone, but better.

The fact that the pain is getting worse is making me think there's more than just the gluten thing going on. Sigh...still searching for answers, I guess.

[CarlaB]

I know I'm probably talking too much about this here , but have you read up on adrenal fatigue? My doc thinks that's why I'm not getting better just being gluten-free and casein-free. I'd bet anything you'd fit those symptoms and that would be why you're sub-clinical on all your other tests. Here's one website that talks about it, a place to start ... Open Original Shared Link

[AndreaB]

And also look into soy and dairy.

Carla is on to something too.

Also check out the article by dogtorj. He has gone through a lot and has done tons of research. I haven't read too much of the article yet as my husband and I like to read together. I just need to read it and hilight what I want him to note.

Open Original Shared Link

[rinne]

Hi.

Lyme can manifest in the digestion. I have heard that the testing for Lyme is as unreliable as the testing for Celiac, the Lyme board folks speak about IGeneX, a lab in Palo Alto, and the importance of the Western Blot as a diagnostic tool for late term Lyme. I have been using the Salt?Vitamin C treatment used for Lyme as a diagnostic tool, if you want more information PM me.

I think Carla is onto something in regards to adrenal exhaustion.

Are you eating dairy?

[mythreesuns]

  CarlaB said:

I know I'm probably talking too much about this here , but have you read up on adrenal fatigue?

I did try to follow your discussion about that but it didn't make much sense to me. LOL How do you test for that?

  AndreaB said:

And also look into soy and dairy.

Also check out the article by dogtorj. He has gone through a lot and has done tons of research.

Yeah, soy keeps popping up as another issue for a lot of people. Outside of EnteroLab, what's a good way to test yourself for that? Soy is is EVERYTHING!!!!

Especially since I'm casein free as well. I've been off dairy since June.

[CarlaB]

Most docs won't diagnose it because they don't believe adrenals are a problem until they're really diseased, not much different than those of us who are gluten intolerant but not celiac. I found an MD who also practices alternative medicine and she's doing a hair analysis. I went ahead and started all the other things suggested by the websites I've posted because I have nearly all the symptoms. She said she'd be shocked if the hair analysis didn't show that I had it.

I believe there's also a saliva test they can do.

[mythreesuns]

  rinne said:

Lyme can manifest in the digestion. I have heard that the testing for Lyme is as unreliable as the testing for Celiac, the Lyme board folks speak about IGeneX, a lab in Palo Alto, and the importance of the Western Blot as a diagnostic tool for late term Lyme. I have been using the Salt?Vitamin C treatment used for Lyme as a diagnostic tool, if you want more information PM me.

I'm curious about these other tests for Lyme. Are they tests that the dr could order, or is it another situation like EnteroLab where I have to pay out of pocket?

[AndreaB]

  mythreesuns said:

Yeah, soy keeps popping up as another issue for a lot of people. Outside of EnteroLab, what's a good way to test yourself for that? Soy is is EVERYTHING!!!!

Especially since I'm casein free as well. I've been off dairy since June.

If you don't have any obvious symptoms from soy than I don't know, but the elminination diet should tell you something.

I, and many others, are gluten/soy/dairy free. I just went dairy free again after trying raw cheese. My allergies weren't as bad but still there.

I do have some recipes I could pm you or post if you don't have other intolerances or allergies that you are dealing with. Main ingredients would be coconut oil or cashews.

[ravenwoodglass]

Hi Toni, Do you eat foods in the nightshade family, tomatoes, potatoes, peppers and eggplant? What finally got rid of every bit of joint pain for me was eliminating these guys. I can have them once in a while now but not every day. Many of us seem to be sensitive to them and it seems to hit the joints. If I have mentioned this before please forgive the repitition.

[Ursa Major]

Toni, you may be intolerant to all lectins, they are what caused the terrible joint pain for me. There are several groups of lectins, and you may not be intolerant to all of them. But in order to find out, you initially need to eliminate them all, and then try one group at a time to see if they cause a problem.

They are: All grains (including rice and corn), eggs, dairy, nightshades (potatoes, tomatoes, peppers, eggplant), legumes (including soy and peanuts).

Check the lectin link in my signature for more info.

[rinne]

  Quote

I'm curious about these other tests for Lyme. Are they tests that the dr could order, or is it another situation like EnteroLab where I have to pay out of pocket?

In order to have this test my understanding is that you go through a doctor. I'm in Canada and will probably have to pay for them myself but depending on your doctor and insurance they may be covered but I don't know. You could check out Lyme Net, perhaps someone there could answer that.

[nikki182]

Hi I'm new here, so please let others correct me if I'm wrong, but I read a couple scientific papers about gluten withdrawal. I guess that if you have a leaky gut and gluten is in your blood, cutting it out of your diet can cause the same symptoms someone gets when quitting drugs like heroine. Something about how in celiacs the gluten protein is not cleaved in the right place on its trip through the intestines, so it ends up with a molecular structure similar to morphine.

In short, the pain gets worse for a short time before it gets better. Also, this definitely happens when you detoxify. I made my mom go on the gluten free diet with me because I'm convinced she's a celiac, and she definitely had bad headaches and joint pains for about the first week and a half of the diet. She is slowly starting to feel better now.

I;m not sure how much truth is in all that, but my point is that my suggestion would be to try to stay on the gluten-free diet even if it causing you some extra pain right now. See if it improves with more time. Also, good idea to cut out dairy and soy like everyone is saying.

I hope you can get your diagnosis figured out soon. It's definitely frustrating, but don't give up. =)

[mythreesuns]

Ugh, what the freak CAN I eat then? LOL

I don't eat too many potatoes or other nightshades, but I do have tomatoes almost every day in my salad. And eggs.

DH gets his first paycheck on Friday and the first thing I'm doing is sending for the EnteroLab tests for whatever food they offer. I gotta find out what's going on here.

Oh, and on a side note, I did see that my dr ordered the Western blot test for my second Lyme test. That was negative.

Also, my glucose was borderline high (98) after fasting, my sodium, potassium and calcium were on the low end of normal (but still "normal" according to the test). What's the one that would tell me where my iron was?

[rinne]

  Quote

Oh, and on a side note, I did see that my dr ordered the Western blot test for my second Lyme test. That was negative.

That is good news.

[Ursa Major]

You know, I used to LOVE tomatoes. I'd eat them all summer long, every day. I also had migraines all summer long, sometimes lasting three weeks at a time, practically living on pain killers, and not being able to function.

Then, when I was tested for intolerances and found out I was intolerant to nightshades, and quit eating tomatoes, those long-lasting migraines stopped. I still get migraines, but they are always obviously linked to not getting enough sleep, a lot of stress, or allowing myself to go past the point of exhaustion and to keep going instead of lying down. They're not triggered by food any more.

Really, from experience I can tell you that it is true, that your favourite foods usually are the ones you're most allergic/intolerant to.

My favourite foods used to be potatoes, rye bread (the German kind), tomatoes, butter, Swiss cheese and cake (not the cakes they make here, which are way too sweet, but my own German chocolate chip cake, or my fabulous Black Forest cake). I never did like spicy food, though, and that's a good thing, spices are extremely high in salicylates.

[marciab]

I was overwhelmed by the treatment choices too. Everything I have read on the net indicated that my diet was full of "crap". Processed grains, msg, sugar, caffeine, pesticides, etc.

I've read and seen first hand that medical tests are not always reliable enough to tell us what is wrong. And even then, some doctors don't know or run the right tests. Sometimes it is a combination of lab results that need to be looked into. And as in the B12 tests, the "normal" range is inaccurate.

I've also decided that when a doctor is NOT concerned about a symptom I am having, it doesn't mean I should not worry or better yet, pursue a cure on my own. My iron was so low and no one seemed worried until I was facing a transfusion. DUH !!!!

I think we have to try different things and see if they work. Just like with the gluten free diet. The celiac tests are unreliable, but if the diet works, you know to avoid gluten.

This is what my doctor had said too, but I was / am still suspicious of medical doctors. I'm slowly working on this, because I think she is a keeper.

Marcia

[ravenwoodglass]

  mythreesuns said:

Ugh, what the freak CAN I eat then? LOL

I don't eat too many potatoes or other nightshades, but I do have tomatoes almost every day in my salad. And eggs.

DH gets his first paycheck on Friday and the first thing I'm doing is sending for the EnteroLab tests for whatever food they offer. I gotta find out what's going on here.

Oh, and on a side note, I did see that my dr ordered the Western blot test for my second Lyme test. That was negative.

Also, my glucose was borderline high (98) after fasting, my sodium, potassium and calcium were on the low end of normal (but still "normal" according to the test). What's the one that would tell me where my iron was?

I could be wrong but I believe ferritin levels are the iron levels. Even a low normal should be addressed with supplements or increasing the amounts of food that is high in the nutrient. If you take a supplement make sure it has both magnesiun and potassium and if you don't already you may want to add a sublingual B12 while you are healing, all cetified gluten-free of course. I would drop the daily tomatoes for a while and see if it helps along with the other occasional nightshades. Then you can add them back in after a month or so and see if you react to them. I know it seems like there are already so many food choices that you can't have but things will get better. Be sure you keep an eye on that glucose level when you go for checkups. Did they do an A1C?

[CarlaB]

I think hemoglobin also tests for anemia. I have learned there are a couple different tests. The one my GI did was iron saturation, which was high, but my hemoglobin was in range, but on the low side.

[mythreesuns]

  ravenwoodglass said:

I could be wrong but I believe ferritin levels are the iron levels.

Did they do an A1C?

I don't see ferritin on any of the test results.

The A1C was 5.5 (normal is 4.5-5.7) so that's good, right?

  CarlaB said:

I think hemoglobin also tests for anemia.

Hemoglobin was 12.4 (normal was 11.5-15.0) so good again, right?

[CarlaB]

  mythreesuns said:

The A1C was 5.5 (normal is 4.5-5.7) so that's good, right?

Hemoglobin was 12.4 (normal was 11.5-15.0) so good again, right?

Yea, that's within range, barely. When I was pregnant, they tested my hemoglobin regularly. When it was up near 13 or 14, I felt better than when it was just near 12. It shouldn't be the cause of your problems though.