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Biopsy Tomorrow

lucky28

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lucky28 Explorer
lucky28
Posted

Finally I will have my biopsy tomorrow. I have been impatiently waiting, eating as much gluten (and feeling miserable) in the meantime. I thought I would feel relief, but I really have alot of mixed emotions. I plan on going gluten free after tonight. But what if my biopsy comes back negative? I know that you can have false negatives but I will feel like a fool. Already some people, family have been discounting celiac as something that is more of a neurotic, hypochondriac type issue that I have engineered.

I do have classic (gastro) symptoms, and have for years, they have been getting progressively worse. My bloodwork only showed a slight increase in ttg and I have the dq2(2.5) gene. I've been vitD deficient for a few years despite prescription D. I have been diagnosed with psoriasis having the same 2 patches on my ankles(that come and go) for 15+ years, interestingly since I upped my gluten intake 6 weeks ago (after the blood work) I have developed a new patch on my back. Over the last 10 years I have had joint pain-not all over but it seems like it will pick a joint, stay there 6mo to a year or more, mysteriously disappear, then move to another joint. I also used to be very much a type A person, driven, sharp, but over the last few years I've lost energy, been exhausted, can't concentrate, horrible memory etc.

I'm not really here to ask any questions, I guess I'm just looking for some moral support, for justification that I'm not losing it. Justification for spending the time and the MONEY(that I don't have) following through on testing.

Thanks

melissa

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Bubba's Mom Enthusiast
Bubba's Mom
Posted

The test isn't bad, so don't worry.

I hope they find answers for you! There's always a possibility that the biopsy could come back negative and you still have disease. They might not get the right spots for biopsy because the small intestine is longer than their scope..unfortunately. :(

If you feel better off gluten, then go off after your biopsy. In the end..you have to be your own advocate. If friends and family "think" you're a hypochondriac..let them! Do what makes you feel the best. :D

IrishHeart Veteran
IrishHeart
Posted

Let's see, you have gluten-

related symptoms, INCREASING in intensity and severity, plus

vitamin deficiencies, PLUS the celiac gene, and feeling poorly on gluten?? Sure sounds like celiac disease to me.

No one on here will ever call you a "hypochondriac". ;)

I do not think wanting answers to your health issues is

"wasting money"-not at all. I think you are VERY wise!!! :)

In the end, who cares what anyone else thinks? Many of us have been dismissed and undiagnosed for years. You would not believe what happened to me--I've told my story many times on here--but suffice to say, the longer you ingest gluten, the more damage you will do.

Burning nerve pain and a decline in mental accuity, ataxia and other neurological symptoms may develop--and you do NOT want those. Trust me!!

I just had to have a test done today because my

NEW GI doc wants to be sure I have not developed lymphoma. Years of undiagnosed celiac disease and listening to others tell me it was not gluten or celiac just made things worse. I "lost" 4 years of my life in gluten-induced brain fog/anxiety/neuropathic pain and living in the bathroom. Don't listen to anyone else--trust your "gut" (pun intended!!) :)

Unfortunately,tests are often wrong. It's up to you to decide if you want to live a healthy life & avoid further autoimmune diseases or possibly, lymphoma. (The genetic test result

was what sealed the deal for me. Double DQ2 genes)

Best wishes--whatever the test shows, do what is best for YOU! :)

lucky28 Explorer
lucky28
Posted
  • Author

Thank you both!

I appreciate you taking the time..

I guess I was just a little worn down today and second guessing myself. I am looking forward to going gluten-free-especially if it will help clear up my exhaustion and memory issues. The stomach issues I have dealt with so long they are pretty much a part of my routine by now (gotta get up extra early so I can leave the house in time for work! LOL) IrishHeart I confirmed my diagnosis 4 days before I got my blood work back- I attended a BEER festival- I don't normally drink beer and I didn't drink all that much but was on the couch (and in the bathroom!) for 2 days afterwards. It was then that I knew I would eventually go gluten free.

I am gluten free starting in 1/2 hour (NPO after midnight). I think I'm prepared-no money for extras but I do have a 15lb bag of basmati rice, my rice cooker, a garden full of veggies and a freezer full of meats! Ready, set, go!

IrishHeart Veteran
IrishHeart
Posted

Thank you both!

I appreciate you taking the time..

I guess I was just a little worn down today and second guessing myself. I am looking forward to going gluten-free-especially if it will help clear up my exhaustion and memory issues. The stomach issues I have dealt with so long they are pretty much a part of my routine by now (gotta get up extra early so I can leave the house in time for work! LOL) IrishHeart I confirmed my diagnosis 4 days before I got my blood work back- I attended a BEER festival- I don't normally drink beer and I didn't drink all that much but was on the couch (and in the bathroom!) for 2 days afterwards. It was then that I knew I would eventually go gluten free.

I am gluten free starting in 1/2 hour (NPO after midnight). I think I'm prepared-no money for extras but I do have a 15lb bag of basmati rice, my rice cooker, a garden full of veggies and a freezer full of meats! Ready, set, go!

I used to do the same thing when I was still teaching---schedule enough time for making sure I was "okay to leave the house" (or worse, NOT eat so I might avoid the problem and then wonder why I felt so lousy all day long--hypoglycemia anyone??? :huh: ) and sadly, I know where every public restroom is within a 300 mile radius of my home--for those "hurry up and get to a potty moments". Now, seriously, that's no way to live! We adapt to these things because we have to and I "assumed" for a long time that this was just the way my body "behaved". When someone tells you "oh, it's just GERD or irritable bowel", take some antacids and some citrucel everyday, you say okay, thanks! and follow their advice. It's a doctor telling you this after all, so it MUST be right? HA! WRONG!! I NEVER felt okay.

As for family/friends--well, hon, I told my LARGE extended family about the genetic component and how all of their various autoimmune diseases and symptoms are probably associated with gluten--but only 1 person listened and went gluten-free and feels better for it. The fact that I lost a drastic 90 lbs. and developed dozens of debilitating symptoms did not seem to cause them alarm--no one thinks it will happen to them. You can only do what is best for YOURSELF and let it go. (that took me a while to get past because I wanted them to get better, too)

When you are feeling GREAT, you can just say "I told you so!" :)

Sounds as if you have the right attitude and committment towards healing. The test is a piece of cake--no worries. Then, you can move forward. I wish you well!!! ;)

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