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Tested But Unsure

Jenilou

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Jenilou Newbie
Jenilou
Posted

Hello everyone :)

I'm new to this site and new to a gluten free diet.

I have had symptoms relating to celiac for quite awhile now but didn't know anything about it until recently. I have been anemic for as long as I can remember. Also have other vitamin deficiencies for years. I have had digestive problems my whole adult life but recently in the last year they kept progressing. Lately I seem to have trouble now even eating some milk products. I have lost a total of 100 lbs in the last 3 years (was needed though) but only about 50 of it I really tried to lose, the other 50 came off easily. Anyway after my digestive problems progressed and I was losing weight without trying I decided to go to the doctor. At the beginning of June I had an upper and lower scopy. The doctor did a biopsy of my small intestine and he came back and said that my results were suspicious of celiac. I then went in for blood work and it came back normal. Has anyone else had this experience?

The doctor put me on a gluten free diet to see if that relieved symptoms anyway. I have been on this diet for less than 2 weeks now and I have never felt this good... and normal!!! So not sure what that means but I don't want to go back feeling like I did.

I am just confused why the blood work and biopsy came back contradicting themselves.

Btw.. Glad to have found this site.

Jenea

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aikiducky Apprentice
aikiducky
Posted

The blood work is only reliable if you have celiac damage in the intestines that has already progressed very far. Otherwise false negatives are fairly common. There are a lot of people here on the board with a positive biopsy and negative bloods, and in that case, you should always go with the biopsy. Especially since you already know that the diet works for you.

Don't be disappointed or start to doubt the diagnosis if you get some set backs and symptoms return again. It seems to be normal to go up and down for the first year or so. Healing takes time, and it takes time to find all the possible hidden ways to get glutened. And healing takes time!

Pauliina

Jenilou Newbie
Jenilou
Posted
  • Author

Thank you for the info! :)

Also another thing. I was talking to my parents today and when my mom went to the gastro today (she has ischemic colitis, no one else in my family has ever been diagnosed with celiac) and because of my recent discovery with celiac, she asked her doctor about me and told him about the contradicting results. He told her to tell me not to let a doctor pin my symptoms on celiac if I didn't have possitive lab results. There could be other reasons I was having problems.

So I guess maybe I will get a second opinion. Although I do feel better for the most part being gluten free.

Thanks again for the info.

Jenea

aikiducky Apprentice
aikiducky
Posted

With positive lab results, does he only mean the blood work? Because if he does he's just not well informed.

BTW you could request the lab report of the biopsy to see what exactly it says.

If you feel better gluten free that is also a piece of information to add to the mix...

Pauliina

gfpaperdoll Rookie
gfpaperdoll
Posted

99.9% that your mom also has a gluten problem. If she were to go a on dairy free & gluten free diet - & grain light to start with, she might not have to go to the GI & have to listen to his ignorant advice. Well, of course you should have things like appendics, cancer, tumors, blockages ruled out. But if you have had workup by a GI I would assume that with an upper & lower scope that they checked all that stuff.

dietary trial is the ultimate test. So if you are feeling lots better - keep it up. Only thing is that you might find that you have an additional intolerance. Some people do & some don't. & then some people once they are gluten-free from 6 months to 1 year can add back in foods that they initially reacted to - just not gluten.

Good for you for going on the diet & finding this web site. Also, look for a local support group. They are everywhere & very helpful to find a gluten-free friend & local restaurant info etc. etc.

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