10 replies to this topic

[mars817]

If an endoscopy showed no damage to the villi could there still be deficiency problems? I'm wondering if I have celiacs because I have most of the symptoms and having very bad anemia and other vitamin deficiencies but my tests came back ok. Trying to figure out if the cause could still be celiacs without having the villi show damage?

[kareng]

Did you have the blood work for Celiac? Get a copy of the pathology and procedure reports and the blood work (if done). Read it yourself. See how many biposies were taken. It is quite common for a doctor to miss the spots with the damage which is why they should take at least 6 samples of the intestine. See if the doc even read the results. Or even biopsied the correct places.

[AandGsmomma]

I have vitamin deficiancy and anemia but my biospy came back fine. However with my biopsy they only looked at the top part of the intestine and only took a few samples. My blood work also was negative, but Im IGA and IGG deficient.

[mars817]

My bloodwork was negative. It was my general surgeon, he did a colonoscopy and endoscopy and he only took one sample, so maybe it was incorrect? I don't know if he really knew what he was doing or just took a random sample because I asked about it. He did say everything looked fine to him. I got copy of the results but I need to find them, my husband might have threw them out. grr.

[mars817]

I have vitamin deficiancy and anemia but my biospy came back fine. However with my biopsy they only looked at the top part of the intestine and only took a few samples. My blood work also was negative, but Im IGA and IGG deficient.

What does that mean to be IGA and IGG deficient? How would I know that? I seem to be deficient on everything else!

[rosetapper23]

It's very common for the biopsies to come back negative even though there is villi damage (according to celiac expert Dr. Alessio Fasano) because either the scope wasn't long enough to reach the damage sections, the surgeon did not biopsy the damaged sections, or the pathologist was either incompetent or unskilled in reading the results. If you B12 anemia, you can take sublingual B12, and if you have iron anemia, you can request to receive iron intravenously (if you're unable to absorb it). Some doctors are unaware that intravenous iron is available, but it is. If you're having difficulties absorbing Vitamin D, Country Life sells Natural Vitamin D, which also contains the proper ratio of Vitamin D and medium-chain triglycerides to help you absorb it. You might also consider taking digestive enzymes and L-glutamine to help heal your gut.

[mars817]

It's very common for the biopsies to come back negative even though there is villi damage (according to celiac expert Dr. Alessio Fasano) because either the scope wasn't long enough to reach the damage sections, the surgeon did not biopsy the damaged sections, or the pathologist was either incompetent or unskilled in reading the results. If you B12 anemia, you can take sublingual B12, and if you have iron anemia, you can request to receive iron intravenously (if you're unable to absorb it). Some doctors are unaware that intravenous iron is available, but it is. If you're having difficulties absorbing Vitamin D, Country Life sells Natural Vitamin D, which also contains the proper ratio of Vitamin D and medium-chain triglycerides to help you absorb it. You might also consider taking digestive enzymes and L-glutamine to help heal your gut.

Thanks! I am getting b12 shots weekly, they have talked iron infusions but I have not been refered to a hematologist yet, waiting on a pill cam study. My surgeon is convienced I have a bleed or something in part of my intestines they couldn't see, but doesn't think celiacs since my blood test was negative.

[GFinDC]

Hi Mars the Red planet,

Yes, you can have celiac damage even if a biopsy doesn't show it. The small intestine is around 20 to 22 feet long, and the endoscopy probe can only reach the first 5 feet or so. There's a lot of unexplored territory there.

[nvsmom]

Most sufferers of autoimmune diseases have deficiencies in vitamins and minerals; D, B12, iron and calcium are commonly low in things like hypothyroidism, Lupus and others.

Conversely, you can have AI diseases and have great blood work. I have celiac, ITP, and hashimotos and I have fantastic blood work, cholesterol, iron and my B12 is above the normal range. I was slightly low in D but still well within normal range so I tripled my D supplements.

Non celiac gluten intolerant people have the same symptoms as celiacs as well as many of the same deficiencies.... As far as I can tell, there is no hard and fast rule when it comes to this area... frustrating as that is.

Best wishes.

[AandGsmomma]

The total IGA and Total IGG were part of my celiac panel. It also included the normal ranges. Since I dont make enough IGA the test results are useless since they are based on an IGA reaction.

[Megan1980]

Most sufferers of autoimmune diseases have deficiencies in vitamins and minerals; D, B12, iron and calcium are commonly low in things like hypothyroidism, Lupus and others.

Conversely, you can have AI diseases and have great blood work. I have celiac, ITP, and hashimotos and I have fantastic blood work, cholesterol, iron and my B12 is above the normal range. I was slightly low in D but still well within normal range so I tripled my D supplements.

Non celiac gluten intolerant people have the same symptoms as celiacs as well as many of the same deficiencies.... As far as I can tell, there is no hard and fast rule when it comes to this area... frustrating as that is.

Best wishes.

Do you have a source for the information that non-celiac gluten intolerance can cause deficiencies, because I've been looking for that info everywhere and haven't been able to find it.

I have symptoms that fit with Hashimoto's and celiac but my celiac panel came back negative as did my thyroid antibodies. The only thing my blood shows is low vitamin d (though I've been taking it for years) and low ferritin. Also I had a low BUN score which when I looked up it said it was either from a low protein diet or malabsorption. I do not have a low protein diet.

I'd love to get some answers! At this point I've been told I have somatization, but I know that's not the case.