Help With Test Results

[DenverJohn]

Hello! I've been "lurking" around this board for a few days now, and really could use some help. I'm 56, and I've been extremely fatigued for nearly seven years now. (Note: A few years before the fatigue I could ride my bike 30 miles in the mountains of Colorado on an average day, after the fatigue I couldn't make it 2 miles from home because there was a small hill.) About five years ago I saw a doctor about the fatigue and they diagnosed "anemia and diabetes". I was given B12 shots, iron and metformin. A couple of years later the sugars were under control but I was still extremely fatigued. They then diagnosed CHF (cardiomyopathy) and anemia. I was placed on a heart cocktail to increase ejection fraction along with B12 and iron. The heart is better but I'm still fatigued. I have a doctor who, for the first time, said it is wise not to throw B12 and iron at anemia, but to find out why I have the "iron defincency anemia" in the first place. This has lead to a Celiac Disease Comprehensive Panel. I was on a gluten-free diet for 10 days before the blood was drawn which they said didn't matter since it took 3 months of gluten-free to affect results. I picked up the results today, but I don't have another appointment with the doctor for three weeks. Would appreciate some help in interpreting these results:

Iron Saturation 16

Iron 57

Ferritin 14

Vit B12 1467 (have been on weekly shots for more than five years)

Folate, Serum >24.0

Reticulocye 1.5

Reticulocyte Abs #0.07

(tTG)Ab, igA <3

1gA, Serum 113

Endomysial Ab 1gA Negative

Endomysial Ab Titer Less than 1:5

If I'm reading lhose last two results correctly, I'm negative for Celiacs. I would love to have an answer to the fatigue, gas, IBS soon. If not Celiacs then what could it be. I do feel somewhat better on the gluten-free diet (less bowel problems), but I'm still tired.

Thanks in advance!

John

PS Sorry for any spelling errors. I can't find spell check on this thing.

[Mother of Jibril]

Hi John,

Two things that stand out to me...

1. Your ferritin is quite low, especially for someone getting iron supplements. Your doctor was smart to check your ferritin and do a celiac panel.

2. Your total IgA also seems low (do you have the reference ranges?). The problem is that if you're "IgA deficient" you can easily get a false negative on the celiac antibodies.

Are you still eating gluten? If so, I would continue and ask your doctor about doing an endoscopy.

[DenverJohn]

Thank you so much for the kind reply. I've been gluton-free for over two weeks now. The blood was drawn on day 10 of zero gluten. I was concerned about a false negative, but they said it didn't matter since it had only been 10 days. The total IgA was 113, reference range was 81-463. There are still tests results out for the genetic portion of the celiac disease. They told me that would take a couple of weeks.

Thanks again for the nice reply. John

[Foxfire62]

Hello! I've been "lurking" around this board for a few days now, and really could use some help. I'm 56, and I've been extremely fatigued for nearly seven years now. (Note: A few years before the fatigue I could ride my bike 30 miles in the mountains of Colorado on an average day, after the fatigue I couldn't make it 2 miles from home because there was a small hill.) About five years ago I saw a doctor about the fatigue and they diagnosed "anemia and diabetes". I was given B12 shots, iron and metformin. A couple of years later the sugars were under control but I was still extremely fatigued. They then diagnosed CHF (cardiomyopathy) and anemia. I was placed on a heart cocktail to increase ejection fraction along with B12 and iron. The heart is better but I'm still fatigued. I have a doctor who, for the first time, said it is wise not to throw B12 and iron at anemia, but to find out why I have the "iron defincency anemia" in the first place. This has lead to a Celiac Disease Comprehensive Panel. I was on a gluten-free diet for 10 days before the blood was drawn which they said didn't matter since it took 3 months of gluten-free to affect results. I picked up the results today, but I don't have another appointment with the doctor for three weeks. Would appreciate some help in interpreting these results:

Iron Saturation 16

Iron 57

Ferritin 14

Vit B12 1467 (have been on weekly shots for more than five years)

Folate, Serum >24.0

Reticulocye 1.5

Reticulocyte Abs #0.07

(tTG)Ab, igA <3

1gA, Serum 113

Endomysial Ab 1gA Negative

Endomysial Ab Titer Less than 1:5

If I'm reading lhose last two results correctly, I'm negative for Celiacs. I would love to have an answer to the fatigue, gas, IBS soon. If not Celiacs then what could it be. I do feel somewhat better on the gluten-free diet (less bowel problems), but I'm still tired.

Thanks in advance!

John

PS Sorry for any spelling errors. I can't find spell check on this thing.

You're never negative with celiac disease until you've had a biopsy of your small intestine. You appear to have classic symptoms for celiac disease. That doesn't mean it is celiac disease, but you have to be biopsied to rule it out.

I would recommend scheduling an appointment for this, and don't let the GI doctor tell you no! If she/he does, find one who will or who understands/specializes in celiac disease. Also, for a positive diagnosis, you need to stay on gluten. Sorry.

Good luck!

[Mother of Jibril]

Hi John,

I agree about the endoscopy. Since your total IgA is so low, I think a biopsy will be your best chance to get a diagnosis... assuming you want something official. In your case (with anemia and diabetes... which are more common in celiacs than the general population) it might be helpful to have an official diagnosis. It could really simplify things with future doctors. The alternative is to keep going on the gluten-free diet and never look back... how are you feeling? I started noticing a difference within 48 hours, but everyone is different. Some people have a lot of damage and it takes a long time to heal.

Good luck!

ps - The endoscopy is not bad... don't let the thought of a biopsy scare you!

[Lisa]

If you were gluten free for ten days prior to your blood work, it may have effected the results as a false negative.

[DenverJohn]

Hi Momma Goose and Mother of Jibril!

Thank you both for the posts to my inquiry. My GP called this morning and asked me to come in next week rather than three weeks from now. By the way he has celiac disease himself, diagnosed in his late fifties, so he is very supportive. By then the other tests should be in. If he feels I need the biopsy I'll certainly have it. Or, I'm willing to go gluten-free for a period of time to see if that helps as well. It's the fatigued I want addressed. If you don't feel good, nothing much else matters as I'm sure a lot of people on this board know as well.

Thanks again to you both, and Foxfire62 for the kindness of a reply. I've felt so alone with this undiagnosed problem for so long. It's nice to know there are caring people out there.

John

[Mother of Jibril]

It's sounds like you have a really good doctor! That's great to hear. I hope you get everything sorted out quickly... I know how hard it is when you feel exhausted all the time.

Let us know how you're doing!