Where To Go From Here......

[darlindeb25]

Ok guys, I do not know what to do from here. I feel like I just keep banging my head into walls! I've never had an official diagnosis of celiac, but it's safe to say I am gluten intolerant. I have been gluten free now for 7 years this pass July. By trial and error I have also found soy, corn, rice, nightshades, cruciferous veggies, red meats, and shellfish to top my list of intolerance's. Soy and corn, not only constipate, they cause nasty rashes. I also cannot have most of these grains in any products I use on my body--most will cause a burning sensation, almost instantly--if not, then they cause a rash. Finally, I have my tummy the calmest it has been in a very long time, probably as normal for it as it will ever be. So, I feel I have found a balance for it.

Now, the rest of me. I am exhausted, yes, I recently (6 weeks ago) had a hysterectomy, yet this exhaustion was going on long before the surgery, I have a field of cicadas in both ears, constantly (tinnitus--no physical cause) since December, allergies, I run a low body temp (average 97) and talk about confusion--words will not come to me, I can't spell the ones that do and right now, even the other symptoms will not come to me! I had a brain MRI, which came back good, a cervical MRI, came back with a slight herniated disc at C5-6, an EMG/nerve conduction study (for my neuropathy) which did show PN in both wrists and hands, my neuro says small fiber "probably" in the rest of my body--thyroid testing shows normal ranges, high AB's means I am high risk, come back in a year for evaluation---blood test come back good, blood pressure is good, ekg is great.

I feel it's a B12 problem. My PCP doesn't put much stock in B12, but does say he has many patients who swear by it and if I want to try B12 shots, then he will work with me--he feels B12 just gives you "rich urine". Yet he has patients who swear by it and he feels there needs to be more study done on it still. I saw him on Sept 5th and have an appt on Oct 5th with him, I stopped taking my 2400mcg of B12 daily so he could take a B12 level on the 5th, but I don't know if I can last it out. Two weeks without my B12 and I am miserable. My feet are swelling again, my legs ache, my knees and hips burn, my hands ache--if possible, I am even more tired--well, it will be 3 weeks on Monday.

I did see and ENT about my tinnitus last Friday and he had a full bloodwork done, he was searching for a auto-immune problem. I also suffer from constant headaches, which my neuro has me taking Topamax for. So the ENT has also ordered a CT for my sinuses. He called me yesterday and said the bloodwork all came back wonderful--no sign of auto-immunity.

Any thoughts? Maybe I expect too much. I have never known good health, so maybe this is the best it gets for me. I do not know what else to do.

I read the doctor threads here and so relate to them. I get so tired of the remarks: "Are you sure you have celiac disease?" I tell them, "Well, if I do not have celiac, then I am gluten intolerant and have been gluten free for 7 yrs, I will be gluten free for the rest of my life, lets deal with why I AM here." The neuro says, "So, what makes you think you have neuropathy?"--this is after I have explained all the weird feelings I have, the buzzings, the vibrations, the numbness, so I repeat it all again and he will say, "Well, I'm sure you do have small fiber neuropathy, we really can't test for that yet!" Duh, was that so hard to spit out!!!!

I have to say, the last doctor I saw, Dr. Gargano, the ENT, was wonderful. He didn't deny celiac disease, he even said to me, "You are celiac and can't have corn either, man that must suck!" We talked about things and he said, "well, even though you do look healthy, I can tell you really do not feel good, something is going on inside that body and we will do everything we can to figure it out." It was the first time I left a doctor's office in a long time feeling good about the doctor.

But, what is wrong? What's going on?

[Glutenfreefamily]

Regarding the b12 I take a very large amount due to me being deficient and Im a vegan and I notice a huge difference with it. I take 1000mcg's daily.

I hate to say this because I hope you don't have it but have you been checked for lyme? The standard dr's tests are very inaccurate though. Igenex I believe is the name of the company that has more accurate testing lymenet is another website for information.

Regarding the tinnitus, do you have feelings of your ear feeling full,dizziness, vertigo? Hearing loss? If so it could be bppv, menieres disease or migraine associated vertigo.

I have Menieres and migraine associated vertigo. My tinnitus varies between birds chirping, cracking sounds and rushing sounds.

Regarding thyroid tests there is a wide variant for testing on what is considered normal levels for your T4. I would check out an endocrinologist to see since that may make a huge difference in how you feel.

I hope you find out whats wrong soon.

[darlindeb25]

Ok, here we go, as for the endo--did that, he is the one who told me I "am high risk, come back in a year." He said to me, "just because your antibodies are high means nothing, your panel is in the normal range, if your doctor sent you to me and said you have a uterus, that wouldn't mean you are pregnant, now would it?" I will never see that QUACK again! My TSH was never the same and the highest it had gone was 2.56, now in my mind, maybe normal for me is .05--who knows. But doctors do not treat most of us as individuals, we are all numbers with $$$$ signs in a normal range.

I was taking 2400mcg daily and will be again too. Starting today. As soon as I get some gluten free sublingual, I will be taking 5000mcg daily. To hell with the doctors, I know the B12 works and if they aren't going to help, then I will do it myself. I just can't handle this anymore. 1000mcg's daily is not a large amount, you are in a very safe range, B12 can't hurt us anyways.

As for lyme's, I was tested for that. Let me see, it was Quest Labs--Lyme IGG, IGM, WB---with the IGG--18 KD to 93 KD all nonreactive and with the IGM, WB--23 KD to 41 KD all nonreactive. I don't know if this lab is good or not, but I have been tested.

As for the tinnitus, the sound never changes, doesn't get louder, nor softer. Not birds chirping, no rushing sounds, or cracking---it's cicadas, or maybe some of you would know them as crickets--its constant. The ENT, says my eardrums are in very good shape, no damage he can see at all, my hearing test shows very minimal hearing loss, still in the low normal range--acoustic nerve disorder was ruled out with another test--he has ruled out TMJ--that's why we suspect a vitamin deficiency or something--tinnitus is sometimes a symptom of those too.

I hope I have covered all your questions. Thank you for responding Glutenfreefamily.

[tom]

Any thoughts? Maybe I expect too much. I have never known good health, so maybe this is the best it gets for me. I do not know what else to do.

Hi darlindeb!

I know of the frustration that leads to thoughts like "so maybe this is the best it gets for me", but I say don't believe it for a SECond!

I usually ask ppl whether they've considered candida overgrowth, since that's kept my health down, well after being gluten-free, but I'm not sure if your symptoms fit. (I did have intermittent ear buzzing which left once on the anti-candida diet)

I think it's time to stop seeing MDs and try some alternative practictioners. There are some truly amazing ppl doing great work in that realm.

I was incredibly skeptical until out of pure desperation I tried an acupuncturist. It was so amazing I began to call it 'magicpuncture'. Also, a Naturopath helped me a great deal.

There are a myriad of types of alternative practictioners and I keep hearing of success stories w/ them. Forum member confusedks is one of the more recent, ~1.5-2wks ago.

You do NOT have to settle for "maybe this is the best it gets for me".

Western Medicine does some things very very well, but your own experience shows it also has shortcomings.

Please . . . .please give alternative medicine a try.

[Rachel--24]

As for lyme's, I was tested for that. Let me see, it was Quest Labs--Lyme IGG, IGM, WB---with the IGG--18 KD to 93 KD all nonreactive and with the IGM, WB--23 KD to 41 KD all nonreactive. I don't know if this lab is good or not, but I have been tested.

Quest is no good for Lyme testing. Do not rely on those results....get tested through Igenex. Igenex is a speciality lab with a high sensitivity. Quest has a low sensitivity and misses most cases of Lyme.

Lyme is difficult to diagnosis to begin with.....you wanna go with the best lab available. Igenex is not 100% but close to it....if your immune system is producing antibodies you have a better chance of testing positive with Igenex.

Even if you have Lyme...the tests can only be positive if your immune system is actively producing antibodies at the time of testing...which isnt always the case (for a number of reasons antibodies may not be detected in a person who does have Lyme).

Lyme is still a "clinical" diagnosis. Based on your symptoms I would say that Lyme is a big possibility...if in your shoes I would pursue this with Igenex testing and follow-up with a Lyme Literate MD.

Do not rely on a regular Dr., a neurologist, or an Infectuous Disease specialist for interpretation of test results or for treatment. When it comes to proper testing, diagnosis and treatment you need someone who does speciailize in Lyme.

With Igenex you will get a higher sensitivity on those bands you were previously tested for...and you will also be tested for more bands.

You would be tested for these bands on both IgG and IgM

18, 22, 23-25, 28, 30, 31, 34, 39, 41, 45, 58, 66, 73 and 83-93

Lyme gets worse if left untreated and it could most definately be a reason for all of your ongoing symptoms...including the leaky gut/food intolerances.