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Nervous Newbie Needs Advice

PMC

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PMC Newbie
PMC
Posted

Hello All, I've been reading on this site for about a week now, haven't posted because I'm trying to tell myself that this is not what is happening to me. I go tomorrow for my intestinal biopsy and have had a blood test that came back "weakly positive. I'm curious if anyone has had a weakly positive blood test and a negative biopsy. Is that possible or am I only in denial about the possibility of having this condition?

I don't see myself as having alot of the same digestive issues as many of you describe. I have had some IBS symptoms for many, many years, but mostly constipation or loose bowels, typically not diarrea. I've never noticed any changes after eating gluten foods and until recently thought this was normal for me until getting a virus while on a cruise ship. I've been home for 2 months now, and have not felt "normal" since before the vacation.

I do however recognize many of the other symptoms that I have had going back to my teen years, I am now 46 years old. When I was young, I was plagued by canker sores, often having 10 or more at a time, I also had sores in my scalp that I would scratch constantly until they bled. All of that seemed to go away after my pregnancy at 18 years old, as well as my long thick hair which began to thin considerably. I never had another canker sore until I was 45, my son however started getting them at a young age and had them as bad if not worse than I did.

Fast forward many years, I can't recall anything specific except that I never felt quite right. I would go to the doctor and left feeling as if i were a hypochondriac - a label I was given by my parents long before! I've since had extreme bouts with migraine headaches which I had for years but stopped suddently after seeing a chiroprator, anxiety, depression, thinning hair, weight gain and in the last 15 years ibs symptoms and in the last 5 years or so my memory has gotten significantly worse and I often cannot focus or concentrate. I can watch a movie or tv show and can't remember anything hours later or can't follow a fast adventure type move!

I'm feeling very anxious as I type all of this, my heart is racing, I'm scared of what is to come! I'm nervous about the disease, the damage and the diet. I'm so overwhelmed I don't know where to start! Most of my family members have already dismissed this as if it is not serious, and just more of my needless worrying. I'm pretty sure, with the exception of one of my sisters and my husband that I will not get any support from anyone else.

I know it could be much worse and feel guily for feeling sorry for myself especially about all of my favorite foods, especially moms cooking that I may never be able to eat again. Bread and pasta are probably my most favorite foods and I haven't heard many good things about the gluten free options that are available. I worry about never being able to travel or eat out without risk of contamination.

I'm worried about my son as well, he has many of the symptoms when he was an infant which seemed to improve as he got a little older until his teenage years when the canker sores, bad acne and intestinal problems which really started after a major move and change in schools which effected significanlty psychologically. The drs blamed it all on nerves and blew us off, I feel so guilty for not digging deeper!

I'm sorry the long winded post! Any advice would be greatly appreciated!

Thanks,

Patty

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divamomma Enthusiast
divamomma
Posted

Positive is positive. I have never heard of anyone being positive on the blood test and negative on the biopsy. False negatives are more common. I know it is hard, take it one step at a time. This forum is extremely helpful and you will learn lots by reading posts. Good luck!

txplowgirl Enthusiast
txplowgirl
Posted

Welcome!

Take a deep breath, count to 10 and relaaaaxxxxx. :)

You've come to the right place.

I'll be 47 in May and I have had problems off and on since I was 8, same as you. In my opinion a slight positive is like being a little bit pregnant. Either you are or you're not. You are at least gluten sensitive if not downright Celiac.

You need to go on the diet. I guarantee you that in 6 months you will be glad that you did.

Yes, it can be overwhelming at first, but it does get easier with time. You have years worth of damage so it will take a long time to get to the optimum you. Things you never imagined that have bothered you will dissapear.

I had canker sores and sores on my scalp for over 20 years that would never go away no matter what I did. After going gluten free and making sure my shampoo was wheat free my sores are gone. They went away within 6 weeks.

I would also advise take your son on this journey too. I bet he will start feeling a lot better also.

We will support you, that's what this website is for. If it hadn't been for this site and the members on here I would have been lost. We are here to support you, answer your questions and help guide you. We are looking forward to helping you.

GFinDC Veteran
GFinDC
Posted

Actually, it is very possible to have a positive antibody test and a negative biopsy. Lots of posts on this board about that happening. I think what Divamomma meant to express is that positive antibodies are a sign of problems, wether or not the biopsy confirms villi damage. I hope she doesn't smack me up the side of the head for that! :-)

The enteroscope is a scary looking long snakey thing that seems like it should be able to reach all the nether regions of innerspace. But the small intestine is 22 feet long, and you know it ain't going to reach all the way through that length. So maybe your villi damage is at 7 feet instead of 2 feet into the small intestine? No way the enteroscope will find it. Another issue is that the villi damage is rated on a scale, called the Marsh scale. Little damage to high damage, or 1 to 4 level Marsh. So what if you are at .5 Marsh? Damage but not enough to be seen by a microscope tech yet? Or some other less than detectable state? Or the microscope tech is having a bad day and can't focus on the view like I have problems with sometime focusing on the computer screen?

The goal really should be to detect and correct the problem before it gets to the stage of causing obvious damage. If your symptoms clear up on the gluten-free diet, it is best to stay gluten-free. Tests don't overrule reality.

I don't play a doctor on TV or know anyone who does. :) Real doctors etc feel free to correct my blurb.

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