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I Got My Blood Test Results Back Today

Guest chetalrim

By Guest chetalrim
in Celiac Disease Pre-Diagnosis, Testing & Symptoms

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Guest chetalrim
Guest chetalrim
Posted

My blood tests indicate that I don't have celiac disease. There were no antibodies present or something along those lines. Anyway, the range for whatever they tested for was between 0-3.0 and my levels were 1.47 which falls into the normal range.

One thing my tests did show up was extremely low ferritin levels. The range is from 15-200 and mine is 5. My doctor looked over my iron levels from my past history and my ferritin levels were 120 3 years ago. So something is going on to make them decrease dramatically. Combine that with some small amounts of rectal bleeding every time I pass a stool and hey presto - my doctor is booking me in for a colonoscopy to investigate the possibility of bowel cancer :(

She says that all of my 'celiac' symptoms - the bloating, nausea, mouth ulcers, and abdominal cramping could be cancer symptoms.

I also have to go back to a basic diet - rice, chicken, fish, vegies etc and reintroduce foods one at a time to investigate food intolerances. I'll be searching for info on that one here so if anyone can recommend a good link for me to have a read I'd be so grateful.

I am so, so scared right now. And I have a niggling pain in my stomach that I wish would go away.........

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mushroom Proficient
mushroom
Posted
My blood tests indicate that I don't have celiac disease. There were no antibodies present or something along those lines. Anyway, the range for whatever they tested for was between 0-3.0 and my levels were 1.47 which falls into the normal range.

One thing my tests did show up was extremely low ferritin levels. The range is from 15-200 and mine is 5. My doctor looked over my iron levels from my past history and my ferritin levels were 120 3 years ago. So something is going on to make them decrease dramatically. Combine that with some small amounts of rectal bleeding every time I pass a stool and hey presto - my doctor is booking me in for a colonoscopy to investigate the possibility of bowel cancer :(

She says that all of my 'celiac' symptoms - the bloating, nausea, mouth ulcers, and abdominal cramping could be cancer symptoms.

I also have to go back to a basic diet - rice, chicken, fish, vegies etc and reintroduce foods one at a time to investigate food intolerances. I'll be searching for info on that one here so if anyone can recommend a good link for me to have a read I'd be so grateful.

I am so, so scared right now. And I have a niggling pain in my stomach that I wish would go away.........

Now, now, calm down a little bit, get your feet back grounded on the earth and relax!!

Celiac testing is often negative in those who seem to have obvious symptoms. There are too many false negatives to shake a stick at. And even if you don't have the actual doctor diagnosable celiac disease, it would seem that you are probably at the least gluten intolerant. Doctors throw out the cancer word quite indiscriminately and scare the bejeezus out of their patients when they don't necessarily know what they are talking about. So take a deep breath, make yourself a nice cup of your favourite tea, and consider the following:

You have low ferritin levels; iron anemia is commonplace among the gluten intolerant. Did they also test for B12, Vit D. folate?? Those are also commonly low among gluten intolerants. And when I say low, the ranges are so wide that even if you are near the bottom of the normal range your are "low" and would benefit from supplementation.

I do not know (remember) your history with D and C, but if you have been constipated it is possible that you have one or more hemorrhoids causing the rectal bleeding; it does not have to be cancer. It is good she is giving you a colonoscopy; while your are having the colonoscopy, since you will have done all the necessary prep and will already be sedated, ask her to do an endoscopy and take at least five samples from your small intestine to check for villous atrophy--it is possible to have this even with negative blood work, and doesn't cost a helluva lot more to go in both ends at once.

The diet recommendation is good; google elimination diet and you should come up with lots of information on how to do this. Basically, you go back to a minimal diet that does not upset you at all, and add back in one food at a time every three or four days, to allow time to react to it. If no reaction, then add in something else. Most people can handle rice, chicken, fish, fruits (maybe peal the skins off) and cooked veggies (go easy on the cabbage, broccol, cauliflower type things to start with).

Do NOT be so alarmed; most likely you are still dealing with food intolerances and I think it is mean to have the possible cancer diagnosis thrown at you at this time; she has no basis for this. If testing rules out everything else then we can consider this diagnosis, but not now....Keep us informed of what is happening so we can continue to offer help.

Warm hugs and kisses

seashele2 Newbie
seashele2
Posted

Were you gluten-free before the labs were done? If you were not consuming gluten before the labs, they would come back negative for antibodies. For example, someone following an elimination diet would test negative for celiac because the things you listed - rice, chicken, fish, veggies etc - contain no gluten to set the antibodies in motion.

When your doctor does the colonoscopy, hopefully she will look for altered villi even though your labs were negative.

Best of luck to you!

Michelle

Western Washington State

ang1e0251 Contributor
ang1e0251
Posted

There are lots of reasons why the blood test could be negative, that does not rule out celiac disease. I'm sorry your dr scared you this way but it is not necesary to do that right now. I agree that the colonoscopy is a good idea right now and also that it is a perfect time to also have the endoscopy. Don't take no for an answer, have the endoscopy. You should have all the answers you want, the dr works for you.

StacyA Enthusiast
StacyA
Posted

Blood in stool is not okay, so just do whatever tests the doctor says until you have an answer. If you don't have cancer, wouldn't you want to know for sure now that the word 'cancer' has been said? If you do have cancer, wouldn't you want to know because the earlier you treat the better?

nora-n Rookie
nora-n
Posted

I had tiny specks of blood on the tissue paper every time, that was before going gluten free, and nowasays I only have that after accidentally getting a little glutened. I heard others have that too.

About 20% of peolple with villous atrophy have negative blood tests, and a tleast 40% of people with partial villous atrophy.

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