Confused and Overwhelmed

[Lakergirl7491]

Hi, I was sort of diagnosed with a blood test about a month ago.  Both my DGP and tTG were very high, (thumbs print away from having Celiac Disease - that's what my dr. said) but I was on a pretty much a gluten free diet for about 2 months prior to the test.  I am asymptomatic so once in a while I would take bites out of my husband's pizza or bread but not often. I'm not sure how long it had been the last time I had eaten gluten prior to the test.   I have no idea that she was testing me for Celiac Disease.  When reviewing all of the 20 labs she did on me, she went thru the celiac disease results by saying: " never, ever, ever eat gluten again, not even the size of a grain of rice." That was it.  I was in a state of shock and didn't ask questions. Plus while she probably is a brilliant doctor, she had poor bed manners so I have switched doctors again.

I have been sick for the past three years. First I had Epstein Barr Virus for about nine months. After about three months of having EBV, I contracted pneumonia and one month after that the peripheral neuropathy started up and continued to get worse to the point the pain was so great I wanted to die.  Then I was better for a few months and then I got sick again and then was tested and diagnosed with Chronic Lyme Disease.  My LLMD thought it was reactivated due to extreme stress in my life. The LLMD only did abx, so I was on that for 18 months and saw a little improvement.

  I switched doctors and she was the one who did the blood test.  I am furious that she didn't prepare me for the test properly.  I hate the thought of having an endoscopy when I'm still so sick.  I've been on a strict gluten free diet for about a month. I do have mycoplasma pneumonia and am on abx for that so my exhaustion and feeling sick could be from a number of things.  However, my neuropathy is getting slightly better.  I still have it but it's down to a 6 instead of a 12 on the pain level scale.  Granted her tests did show that I have a leaky gut and huge malabsorption problem which may take awhile to heal. Again no instructions on what I should do.  My body needs a major overhaul.

What should I do about getting a proper Celiac Diagnosis diagnosis?   I'm terrified that eating gluten for two months will make neuropathy worse again.  Do I need to have a biopsy to have a correct diagnosis? Is a correct diagnosis that important if I decided to go completely gluten free?  So confused. Any thoughts are appreciated.

 

 

[ravenwoodglass]

Welcome to the board. Sorry you are going through all this. To be tested for celiac you do need to be eating gluten. It doesn't have to be a lot. A couple slices of bread worth would be enough. Most doctors will want to do an endo to check and see how much damage is there. A full Celiac panel would also be needed. There can be false negatives with both though so a good strict trial of the diet is often a good idea.

Have they tested your B12 levels? Low B12 can contribute to PN. If you are celiac you will have a hard time absorbing vitamins so a subligual B12 is better than a swallowed tablet. You can try taking them even if they haven't checked your levels but let your doctor know about any supplements as when levels are done they would need to be stopped for a week or two before the blood draw. I found sublingual B12 to helpful in relieving the PN somewhat and of course continued on them post diagnosis.

It can be quite important to get tested because celiac is genetic. Once one person in a family is diagnosed it is advised that all first degree relatives be screened. You also would need to be screened for ostoeporosis and depending on your age and sex coverage might be denied without a diagnosis. Some folks also find it helps when dealing with relatives and friends who might question why we aren't eating their yummy gluteney food.

You should check out the Newbie 101 thread at the top of the Coping section as it has a lot of good info on what we need to do to be safe.

[Gluten-free-01]

Hello Lakergirl, to be honest if I were in your situation, I would reject the endoscopy, at least for the time being. You said you have mycoplasma pneumonia and take antibiotics and on top of that you are in pain caused by the peripheral neuropathy now. So I think this is not a good time to stress yourself even more with endoscopy/biopsy. Both the pneumonia and the peripheral neuropathy are probably related to celiac.

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So now is not a good time for a gluten challenge, in my opinion.

That said, I don’t really know how important a formal diagnosis is to you. I agree with ravenwoodglass that having a formal diagnosis can help you in many ways. So the decision is up to you..

I hope you feel better soon.

[Victoria1234]

Just curious, if you are asymptomatic, what made you go gluten-free originally?

[Lakergirl7491]

  On 9/8/2017 at 9:39 PM, Victoria1234 said:

Just curious, if you are asymptomatic, what made you go gluten-free originally?

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[Lakergirl7491]

Victoria1234, when I was diagnosed with Lyme Disease a gluten, dairy, sugar, and alcohol free diet are typically prescribed.  My doctor tested me for gluten sensitivity test and I wasn't sensitive so I wasn't always diligent about it.  I am now. 

[Victoria1234]

  On 9/8/2017 at 9:44 PM, Lakergirl7491 said:

Victoria1234, when I was diagnosed with Lyme Disease a gluten, dairy, sugar, and alcohol free diet are typically prescribed.  My doctor tested me for gluten sensitivity test and I wasn't sensitive so I wasn't always diligent about it.  I am now. 

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Ok I see. I didn't know that about Lyme disease. I absolutely hate ticks- I had rocky mt spotted fever that finally got diagnosed almost too late.