I hate not knowing!

[PixeI]

Hi there!

So I went to a gastro at 41 because Colon Cancer runs in my family. I did blood work before going in to do it on Monday.

First thing the dr says to me before the colonoscopy is "you have celiac!" ...I said "excuse me?"

He told me about my blood test results. I faught him and said it can't possibly be. He said well we will take a biopsy to be sure.

So I went home and I have access to all my reports:

Ttg IgA: 25 U/mL

And a crap ton of other blood work with abnormal levels that I don't know what to make of. Also in the endo notes it says: "The second and third parts of the duodenum looked normal; however, the first part of the duodenum had some bumpiness to it that could reflect celiac disease."

Also they found a stomach ulcer and several polyps - one that was 10cm in my rectum.

My Dr went on vacation right after so I won't know anything until end of November. I can't wait this long!

Can anyone give me any insights? Please?

Thank you!

 

 

 

 

[trents]

The ttG-IGA value needs a reference range to make sense of it. Do you have that. What is the "normal" range? Different labs use different ranges.

Can you post the entire blood work? Celiac disease damages the lining ("villi") of the small bowel which is the nutritional absorbing organ of the body. This damage, when not addressed over time, typically results in nutritional deficiencies because your vitamins and minerals are not being absorbed efficiently, even though you may be eating well. So you can develop things like anemia and osteoporosis, tooth enamel decay and a host of other nutritional deficiency-related medical issues. 

In addition, there are several other stomach, small and large bowel diseases that have higher than average rates in the celiac population, things like Crones disease, IBS and GERD. Other autoimmune conditions have higher in the celiac population such as diabetes, thyroid, lupus, MS, fatty liver disease and various neurological problems.

Also, the lining of the small bowel becomes more porous such that larger than normal protein fractions from what we eat pass into the blood and typically create other food intolerances over time. The immune system detects them as invaders.

Does this help?

Edit: This is important. Now here this! Don't start a gluten-free diet until the biopsy is performed. You don't want the small bowel lining to begin healing and so sabotage the test.

Edited October 23, 2021 by trents

[PixeI]

1 hour ago, trents said:

The ttG-IGA value needs a reference range to make sense of it. Do you have that. What is the "normal" range? Different labs use different ranges.

Can you post the entire blood work? Celiac disease damages the lining ("villi") of the small bowel which is the nutritional absorbing organ of the body. This damage, when not addressed over time, typically results in nutritional deficiencies because your vitamins and minerals are not being absorbed efficiently, even though you may be eating well. So you can develop things like anemia and osteoporosis, tooth enamel decay and a host of other nutritional deficiency-related medical issues. 

In addition, there are several other stomach, small and large bowel diseases that have higher than average rates in the celiac population, things like Crones disease, IBS and GERD. Other autoimmune conditions have higher in the celiac population such as diabetes, thyroid, lupus, MS, fatty liver disease and various neurological problems.

Also, the lining of the small bowel becomes more porous such that larger than normal protein fractions from what we eat pass into the blood and typically create other food intolerances over time. The immune system detects them as invaders.

Does this help?

Edit: This is important. Now here this! Don't start a gluten-free diet until the biopsy is performed. You don't want the small bowel lining to begin healing and so sabotage the test.

Thanks, Trent!

The ranges for my ppg IgA test are 1-3 normal, 4-9 at risk, 10+ positive. I'm at a 25.

I'll post my blood work when I get home.

I already got a biopsy - I'm just waiting for the results. Problem is my Dr is out of town for the next month.

Thanks so much!

[ravenwoodglass]

You have strongly positive blood work and abnormal results on your endo. IMHO it should be fine to go gluten free as all your testing is done. You may find you get some relief of your symptoms before you even go back to see the doctor. Starting the gluten free lifestyle can be a bit daunting at first and there are many knowledgeable folks here to help you with that process.

[PixeI]

20 hours ago, ravenwoodglass said:

You have strongly positive blood work and abnormal results on your endo. IMHO it should be fine to go gluten free as all your testing is done. You may find you get some relief of your symptoms before you even go back to see the doctor. Starting the gluten free lifestyle can be a bit daunting at first and there are many knowledgeable folks here to help you with that process.

I also have one of the two genetic markers for celiac. 

I'm going grocery shopping now and going to have a go at seeing what my options are for gluten free food.  I'm not going to go too crazy about it until my doctor comes back in a month and officially diagnoses me... but I don't think things are looking good.  I am WAY too lazy to be celiac.  I've always eaten only one small meal a day of whatever I wanted, mostly carbs.  I live off them.

[PixeI]

20 hours ago, ravenwoodglass said:

 

Oh no!  I just looked at my sons DNA and looks like he has one variant too.......   He's 6!  I am praying he doesn't have to go through this!

[ravenwoodglass]

14 hours ago, PixeI said:

Oh no!  I just looked at my sons DNA and looks like he has one variant too.......   He's 6!  I am praying he doesn't have to go through this!

If he does he will have you to help him through. Many with the gene never develop celiac however you should have him tested for antibodies even if he doesn't show GI symptoms.  Celiac can impact mood and learning, for example, before the GI stuff seems more than an occasional annoyance.

[trents]

As ravenwood glass said, having the gene does not equate to having celiac disease. Most who have the gene or genes do not become celiacs. It also takes some kind biological stress event (such as a viral infection) to activate the disease and turn what is genetic potential into active celiac disease. But, many people have a "silent" form of the disease in which, at least in the beginning stages, produces little if any GI distress. So, it would be good to get your son tested and to keep an eye out for the changes in behavior or for symptoms that would suggest he has developed the disease.