Help Sorting Things Out

[Kerryloves2travel]

HI~

I'm new here and have had undiagnosed issues for years - last 5 have been a whirlwind of "I've never seen that before" symptoms. Father & his sister had type 1 diabetes & died at 43, so naturally I am terrified of that diagnosis. Sister has discoid lupus, bro now Type 2 ? diabetes with horrible neropathy & nerve damage. Niece has psoriasis.

Latley docs blame mine on menopause, but I keep telling them thers is something autoimmune going on. Have a bit of osteo arthritis in knee, but fluid drainage & yoga has helped that. Been very active all my life.

My symptoms include "traveling" joint pain, fatigue, dry mouth, inflammation, weird rash on trunk of body & side of face, accompanied with extreme fatigue & gut ache- this typically lasts 4-5 days and is gone. By time I get to doc, rash is gone. Finally saw dermatologist that said she had never seen anything like it! Did all types of Lyme disease testing, mercury poisoning, etc. Next step is to do skin biopsy when comes back-

Supporting my brother I went with him to wonderful clinic 4 hours away. I have had burning feet & pin & needles & edema. Neurologist there did test & said I had some nerve damage. Ordered blood work & found very low in B12.

Did research & found joint pain, nerve damage sign of low B12. Eat plenty in diet, so not absorbing it.

Started weekly shots. Good news blood sugar was excellent! Follow up w doc here ..tested for iron, anemia, etc . no problems. But celiac disease test showed:

TTG AB, Iga 1.3 Under 7 neg.

Gliadin DGP AB iga 14. 4 over 7-10 positive Flag H

Iga 607 standard 87-474. Flag H

Is 1st test the standard talked about? Doc said she had never seen such a high Iga number in 16 years of practice.

I have NO gut or bowel issues. In fact, I seem to have a strong stomach compared to most of my friends.

Can anyone help decipher this?

Referred to GI and wants me to do colonscopy (why no endoscopy?) which insurance doesn't pay...goes to deductible which is very high ( so are our premiums- but I bet most of you know this problem already!)

Waiting as my son has had stomach problems, on and off for 2 years. Started in college & stress totally adds to his issues. He is scheduled for endoscopy this week.

Meanwhile, I will try gluten free diet. Couldn't hurt, right?

Any info or comments would sure help....

Thanks.

[IrishHeart]

Stay on gluten and have a celiac biopsy done!!

Celiac is NOT diagnosed via colonoscopy or just an endoscopy alone.

You need the biopsy done. Your Doctor should know this.

If your derma knows how to do a proper biopsy for Dermatitis herpetiformis, the skin form of celiac disease, she can DX you from that. (If indeed, your rash is DH)

It does not matter if you have no gastro symptoms. Many people have no gastro issues ---but tons of autoimmune problems and vitamin deficiencies--- and when biopsied, show total villous atrophy.

You can have Silent Celiac.

Read about the disease a bit more. To me, all those symptoms you have add up.

Your celiac panel seems incomplete, as far as I know, but someone else can weigh in here with better knowledge.

I am sero-negative, so my test results meant nothing and I confess, I am not very well-versed in interpreting them.

Even if you are NEG on testing, a gluten-free diet will tell you if it's an issue.

[Takala]

Insist on getting an endoscopy biopsy, NOT a colonoscopy. The endoscopy looks at damage in the stomach/small intestine and is the next step after (positive) blood tests. Stay on gluten until this is done. Refuse the colonoscopy if the GI doc claims that must be done "first" in the sequence. Insist on being referred to non- crooked GI immediately if they do not cooperate. (threaten to turn them in to your state medical board if they persist in doing tests which are irrelevant.) Work with dermatologist to get biopsy done on next skin outbreak, which is also way to get official celiac diagnosis.

Insurances typically will pay for baseline colonoscopy around age 50 and most GI docs see this as a real cash cow- you go to them for anything, and they will try to schedule you for one of these instead of what you came to them for.

Digital cameras are very handy for documenting rashes.

Get all copies of tests, in writing.

PM Skylark if she does not show up here soon.

[Cara in Boston]

Just wanted to repeat: KEEP EATING GLUTEN until your testing is done. Even a short time gluten free can change test results.

[Metoo]

HI~

I'm new here and have had undiagnosed issues for years - last 5 have been a whirlwind of "I've never seen that before" symptoms. Father & his sister had type 1 diabetes & died at 43, so naturally I am terrified of that diagnosis. Sister has discoid lupus, bro now Type 2 ? diabetes with horrible neropathy & nerve damage. Niece has psoriasis.

Latley docs blame mine on menopause, but I keep telling them thers is something autoimmune going on. Have a bit of osteo arthritis in knee, but fluid drainage & yoga has helped that. Been very active all my life.

My symptoms include "traveling" joint pain, fatigue, dry mouth, inflammation, weird rash on trunk of body & side of face, accompanied with extreme fatigue & gut ache- this typically lasts 4-5 days and is gone. By time I get to doc, rash is gone. Finally saw dermatologist that said she had never seen anything like it! Did all types of Lyme disease testing, mercury poisoning, etc. Next step is to do skin biopsy when comes back-

Supporting my brother I went with him to wonderful clinic 4 hours away. I have had burning feet & pin & needles & edema. Neurologist there did test & said I had some nerve damage. Ordered blood work & found very low in B12.

Did research & found joint pain, nerve damage sign of low B12. Eat plenty in diet, so not absorbing it.

Started weekly shots. Good news blood sugar was excellent! Follow up w doc here ..tested for iron, anemia, etc . no problems. But celiac disease test showed:

TTG AB, Iga 1.3 Under 7 neg.

Gliadin DGP AB iga 14. 4 over 7-10 positive Flag H

Iga 607 standard 87-474. Flag H

Is 1st test the standard talked about? Doc said she had never seen such a high Iga number in 16 years of practice.

I have NO gut or bowel issues. In fact, I seem to have a strong stomach compared to most of my friends.

Can anyone help decipher this?

Referred to GI and wants me to do colonscopy (why no endoscopy?) which insurance doesn't pay...goes to deductible which is very high ( so are our premiums- but I bet most of you know this problem already!)

Waiting as my son has had stomach problems, on and off for 2 years. Started in college & stress totally adds to his issues. He is scheduled for endoscopy this week.

Meanwhile, I will try gluten free diet. Couldn't hurt, right?

Any info or comments would sure help....

Thanks.

I am no expert, but your blood work shows you have celiac. Usually doctors require the endoscope to diagnose you, they won't just rely on bloodwork alone, but endoscopes can have false positives. Your son probably has it too, its genetic.

Do NOT go gluten-free until you are done with testing.

Many people don't have gastrointestinal symptoms, or are fairly symptomless, but there is still internal damage going on.