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Confused...

skappy

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skappy Newbie
skappy
Posted

About 3 years ago I was diagnosed with IBS (I went to the doc with bloating, changes in bowel movements, gas, etc). In May I was diagnosed with a gastric ulcer and was on meds for 3 months to find that the ulcer was gone but I had gastritis. After continuing on meds I continued to feel worse so I finally went off (I had tried 5 of 6 acid reducers and nothing worked). I actually felt better being off meds, but my IBS symptoms were still acting up.

I was recently tested for celiac and my IGA levels were 14 (11 is normal), IGG levels were 100 (11 is normal) and TTG levels were negative. I had a biopsy 3 years ago that came back negative. Is it possible to have developed celiac in that time period, or could the biopsy have been a false-negative? Are you born with celiac? In addition to the general "IBS" symptoms I have, I have experienced fairly rapid weight loss (10 pounds in about 3 months) with no change to my diet or activity (if anything I'm eating more unhealthy foods and exercising less). Any advice anyone can offer is greatly appreciated.

Thank you!!!

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ShayFL Enthusiast
ShayFL
Posted

Yes, you sure could have developed it in that 3 years time. Your blood work is STRONG positive and you should request a biopsy NOW to look for damage. Either way, there are plenty of doctors who would dx you with those bloods plus your symptoms alone.

If you are still eating gluten, now is the time for biopsy. Back then you may not have had enough damage to show up in biopsy. Or they didnt take enough samples from enough different areas or the technician was not skilled enough to read your slides correctly. You have likely had Celiac all along. So as you suspect....a false negative is very likely back then. This is a common situation for many in here.

You are not born with Celiac. You can be born with the genes, but you need a trigger (gluten). So as soon as you get formula or food with gluten you CAN develop Celiac (or at any point in your life). The truth is we simply do not know why exactly people with the same genes and exposure to the same triggers do not develop the disease the same.

You should ask for GENETIC testing as well just to make it complete.

So now. Get ALL of the testing out of the way and start eating gluten-free as soon as your biopsy is done. Prepare yourself and your kitchen. Be ready.

And here is to you getting better!!

skappy Newbie
skappy
Posted
  • Author

Thank you so much for the response! Everything you said makes perfect sense, and I am going to go get a biopsy. Hopefully I'll be able to change my diet after that and start feeling better soon!

Mom2Twins Rookie
Mom2Twins
Posted

I also wanted to add, from what I have read, is that while some of the tests are very specific (the tTG and EMA), they won't be positive until you have severe damage in your intestine. I think I read somewhere that a positive tTG correlates with total villous atrophy, meaing you have no villi left.

In most diseases, they don't wait for your organ to be destroyed before they diagnose you! I noticed your Ttg was normal - so you could be either gluten sensitive or in the early stages of celiac.

If your biopsy is normal, I would not count celiac or gluten sensitivity out. I read an amazing book recently - called "going against the grain", and I would recommend you read it. It really opened my eyes on the issues of grains and health problems.

All the best, keep us posted.

Sue

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