Waiting For Biopsy

[wiggle]

Hi

I m a new girl , iv been looking around on here and first can i say - Yippppeeee! this site is wonderful and such a relief to find you all.

I have had a positive blood result with symptoms of depression , anxiety , tiredness and foggy brain. I think you will all understand when i say i desperately want a positive result (although i worry about my family having it too) but now i have to wait for maybe two months until the biopsy and my anxiety particularly is getting really very hard to cope with. Although tempted just to cut out the gluten now i know that i do want real confirmation. I have a few hard things coming up in the next month or so and i'm worried if i will be able to cope with them , i think i know i just need to really try to 'suck it up' for hopefully this last push but wondered if any body had any words of advice?

Ps The longer i wait the more i worry i shall be so disapointed if the result actually comes back as negative.

Huge thanks and very best wishes to you all.

[cyclinglady]

I was shocked when my doc suggested celiac disease as I didn't have any intestinal symptoms and because my husband has been gluten free for 12 years (how could we both have it?)   My blood test came out as "mild" but seven weeks later, my biopsy showed Marsh Stage IIIB (moderate to severe damage).  

 

I can tell you that I ate gluten like a fiend for those next seven weeks (I enjoyed baking my own  bread) and I'm talking a loaf a day!  My the end of the seven weeks, I started to get "a rock like feeling" in my stomach and indigestion.  My digestive tract was starting to slow down.

 

I knew I had celiac disease in my heart, but I figured that until the biopsy, I was going to eat as if they were my last meals on earth.  

 

Hang in there.  Eat your old favorite gluten things and enjoy them (I know they are making you feel yucky).  Take comfort in that  you'll find new gluten free foods (or you can convert your old recipes) when you go gluten free after your biopsy. 

 

My advice for the anxiety and depression?  Take a walk for the depression and clean off your schedule as much as possible.  Learn to say "No" for the next few weeks.   Let the housework go.  At work, don't volunteer for anything extra.  Just keep plodding along.

 

You can do it!  

[Lock]

I totally know how you feel. Anxiety is a big part of my problem too. Right now I have not yet scheduled a biopsy and I need to decide whether to start eating a lot more gluten or just not have the biopsy. I really want a positive result, strange as that seems, if it were to be negative I will feel like I've lost my ammunition to get my sick family members to pay attention and consider going gluten free too. It will also put to rest my lifetime of confusion over what is wrong with me. But with the fall coming up there are things on the schedule that I cannot imagine being able to cope with if I go back to eating wheat, and then there are the holidays. HOW can I get through the next few months if I need to go back to eating gluten for a biopsy? But it has already been four months off most gluten, and I feel so much better in fact my serum tests came back negative. Because of my strongly positive genetics and positive stool tests, and my symptoms and long history of illness, and profound improvement when I cut out most gluten, there is no doubt I have either celiac disease or non celiac gluten intolerance. But without the intestinal celiac disease proof, some of my family members throw me into the category of "oh you are just following the gluten-free fad, it's just another diet fad". I get the strong feeling some doctors think that way too. In your case, your blood is positive so you probably will be more likely to have a positive biopsy too, but the anxiety you feel can be unendurable. Unless you know you have a problem with drug abuse, have you considered getting a low dose of an anti-anxiety med to get you through this? I think in the long run drugs are toxic and make gluten sensitive problems even worse, but in the short run, you might benefit while you prepare for the biopsy if the anxiety is so strong you have trouble functioning. Especially if you have trouble sleeping at night. You could take one at bedtime or cut it in half or quarters during the day. Could you talk to your doctor about that?

[wiggle]

Thank you for the replies, i'm not a big crier at the moment- all a little numb feeling, but cycling lady i'v just sat and read your reply and sobbed through it - thank you, it just means such a lot to hear someone say they get it, its understandable and that i should say no to things for a while. 

 

Lock you sound like you are really going through it to at the moment, i think we both know by the sound of it we need to try and get these results ... its just getting there! The worry of family too can be a massive consideration.I have tried tablets for depression before and found my concentration getting even worse and in the end couldn't trust myself to drive , maybe i should go back to doc and see if they can give me something for this horrible anxiety now - i have a feeling they take a month or so to kick in though? Always tried so hard not to go for the tablets but maybe if it was short term..... 

[ravenwoodglass]

Welcome to the board.

It is very rare for there to be a false positive with blood work. False negatives are more common. The choice of whether to get the endo or not is your choice to make.  Some people need that positive endo to stick to the diet but others don't. If you need that 'official' diagnosis for accomodations at work or school then you would need to continue with the gluten.  There are some doctors that will give a diagnosis based on positive bloods, the decrease in antibodies on repeat blood work and good response to the diet.

If your main reason is to convince family members that your celiac is 'real' the keep in mind that our healing on the diet can make believers out of them. Even if you do have a positive on both blood and biopsy some family members will likely refuse to test.  We unfortunately see that all too often here.

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