Please Help Me Figure Me Out! Pos. Biopsy, Neg. Bloodwork

[MTOkieDokie]

Hello, Just joined up because I really need help figuring out what is going on. I am a 34 year old female and I have been seeing a GI doc for the last 6 months to figure out what is going on with my gut. I have all the lovely symptoms of bloating, diarrhea, bloody stools, nausea. These are also accompanied by low B/P of about 80/50 numbness/tingling in my extremities, generalized pain, weakness, faintness, and a rash covering different parts of my body at random places/times. I also have had my gall bladder out about 6 years ago, and have gotten kidney stones several times in my life if any of that matters. My GI has done a colonoscopy which showed inflammation, and an EGD which also showed inflammation. The report on the EGD Biopsy said it was "consistent with Celiac". I thought "Not what I was expecting, but ok, cut out gluten, will do." Now here is my problem , my doc sent me for the celiac antibody panel, and it came back negative. So I ask him if I should still try a gluten free diet and he said no. Too bad I have already been trying it for the last 3 days and I can already tell that my stomach isn't hurting near as much as it always has. SO where does this leave me? Can it be celiac if the blood test was negative, but the biopsy was positive? Is there anything that any of you are aware of that can mimic celiac in such a way? Thanks so much in advance for any help any of you can offer. I am at my wits end right now because I really thought we were getting me figured out and then just so quickly I feel like I am right back at square one.

[powerofpositivethinking]

welcome 

 

check out this link:  Open Original Shared Link

IMO you've got celiac with that positive biopsy.  

 

Do you know which blood tests were run?  also do you have a copy of your blood tests?  If not, I would suggest getting a copy.  In order for blood tests to be accurate you do need to be consuming gluten.  here is a complete celiac panel:

 

Comprehensive Celiac Panel:

DGP iga/igg

ttg iga/igg

EMA

Total iga serum-this is a control test to make sure you make enough iga to validate the other testing

check out page 12 in this report for testing information:

Open Original Shared Link

 

In addition I would suggest you get the following nutrient levels tested as celiac affects absorption.

 

Vitamin/Minerals:

Complete Blood Count (CBC)

Complete Metabolic Profile (CMP)

Vitamin B-12

Folic Acid

Vitamin A, D, E, K

Ferritin

Iron

Magnesium

Zinc

Copper

Niacin

Riboflavin

C-Reactive Protein

Good info from University of Chicago Celiac Center:

Open Original Shared Link

 

also here is a great newbie thread: https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

I know there is a lot of information in this post, but don't let it overwhelm you.  You can do this!  Hope this all helps!

[Barbarara]

Hello, Just joined up because I really need help figuring out what is going on. I am a 34 year old female and I have been seeing a GI doc for the last 6 months to figure out what is going on with my gut. I have all the lovely symptoms of bloating, diarrhea, bloody stools, nausea. These are also accompanied by low B/P of about 80/50 numbness/tingling in my extremities, generalized pain, weakness, faintness, and a rash covering different parts of my body at random places/times. I also have had my gall bladder out about 6 years ago, and have gotten kidney stones several times in my life if any of that matters. My GI has done a colonoscopy which showed inflammation, and an EGD which also showed inflammation. The report on the EGD Biopsy said it was "consistent with Celiac". I thought "Not what I was expecting, but ok, cut out gluten, will do." Now here is my problem , my doc sent me for the celiac antibody panel, and it came back negative. So I ask him if I should still try a gluten free diet and he said no. Too bad I have already been trying it for the last 3 days and I can already tell that my stomach isn't hurting near as much as it always has. SO where does this leave me? Can it be celiac if the blood test was negative, but the biopsy was positive? Is there anything that any of you are aware of that can mimic celiac in such a way? Thanks so much in advance for any help any of you can offer. I am at my wits end right now because I really thought we were getting me figured out and then just so quickly I feel like I am right back at square one.

Yes you still can have celiac.  Often doctors don't know that there is NO definitive test for celiac.  You can have a negative test and still have it.

Your biggest clue for me is the rash associated with celiac: dermatitis herpetiformis, which is what I had.  Mine went away after going gluten free and hasn't come back.  Google images for the rash and see if it looks similar to the pics.  They also can do a skin test to diagnose, but if you're already starting gluten free, don't bother. 

 

The previous post mentions vitamin and mineral testing.  Because our gut is so messed up from celiac, we have malabsorption and malnutrition.

I see a chiropractor who is a clinical nutritionist and also does applied kineseology to see which supplements my body wants.  It's a different approach.

 

This is my two cents. 

 

Let me know what you think about this. 

[MTOkieDokie]

Thanks so much for the welcome and all the info! 

 

So the first link says that it is possible, but rare to have Celiac and a negative blood test. ( Again, thanks so much for that link.  I have only been finding results on pos. blood work and neg. biopsy)  I believe that he had the complete panel run on me, but I don't have the exact results in front of me. My doc is really hard to understand over the phone and when I asked he basically got kinda mad at me asking so many questions and told me that I was just a hard case. lol 

 

I just started eating gluten-free after I had my lab drawn so I should have had plenty of gluten in my system for my test.  That's why I was confused about the biopsy result, as my doc didn't seem to think that I had Celiac even though it suggested that I did.  I was honestly thinking I could have mastocytosis or crohns going into all of this, but I don't know if they can appear as the same kind of damage to the small intestines as Celiac.  What I do know is that going gluten free the last few days has really helped my stomach.  I am not running to the bathroom after eating each time and my stomach isn't cramping up and burning as bad so I plan on sticking to the gluten-free diet even if he doesn't think it is warranted. 

 

Before going to the GI, I know my GP did run a CBC and CMP and both came back normal.  He started me on Zantac (H2 blocker), and Zyrtec (H1 blocker), and that got rid of the hives and sandpaper like rashes I was breaking out in.  Then the GI stared me on Questran powder 3 times a day and that has been helping a bit with the diarrhea.  I have no doubt that I stay pretty dehydrated and am lacking in several nutrients.  Right now I am 5'9 and weigh 135, but I was 118 last summer before swinging up to 160 during the winter.  The last few years I have been having huge swings in my weight which has normally stayed right around 135. IS this a problem with folks with celiac?

[powerofpositivethinking]

I would print out that link for your doctor since Chicago is considered one of the top celiac centers in the country.  From what I get, it seems like your doctor is frustrated because he doesn't know the answer, but that spells it out for him 

 

there are some around here that had a positive biopsy and negative blood work, so hopefully they'll comment soon!  The biopsy is considered the gold standard anyway.  My situation is the opposite positive blood work, negative biopsy 

 

As for the weight issue, mine has always been on the higher side, so I can't speak much to that.  I hope your doctor is more cooperative next time.  Just sounds like his ego is a little bruised 

 

 

Thanks so much for the welcome and all the info! 

 

So the first link says that it is possible, but rare to have Celiac and a negative blood test. ( Again, thanks so much for that link.  I have only been finding results on pos. blood work and neg. biopsy)  I believe that he had the complete panel run on me, but I don't have the exact results in front of me. My doc is really hard to understand over the phone and when I asked he basically got kinda mad at me asking so many questions and told me that I was just a hard case. lol 

 

I just started eating gluten-free after I had my lab drawn so I should have had plenty of gluten in my system for my test.  That's why I was confused about the biopsy result, as my doc didn't seem to think that I had Celiac even though it suggested that I did.  I was honestly thinking I could have mastocytosis or crohns going into all of this, but I don't know if they can appear as the same kind of damage to the small intestines as Celiac.  What I do know is that going gluten free the last few days has really helped my stomach.  I am not running to the bathroom after eating each time and my stomach isn't cramping up and burning as bad so I plan on sticking to the gluten-free diet even if he doesn't think it is warranted. 

 

Before going to the GI, I know my GP did run a CBC and CMP and both came back normal.  He started me on Zantac (H2 blocker), and Zyrtec (H1 blocker), and that got rid of the hives and sandpaper like rashes I was breaking out in.  Then the GI stared me on Questran powder 3 times a day and that has been helping a bit with the diarrhea.  I have no doubt that I stay pretty dehydrated and am lacking in several nutrients.  Right now I am 5'9 and weigh 135, but I was 118 last summer before swinging up to 160 during the winter.  The last few years I have been having huge swings in my weight which has normally stayed right around 135. IS this a problem with folks with celiac?

[notme]

oh, me!  me!  

 

my blood test was neg but my doc could see the damage caused by celiac disease.  but the biopsies/blood tests were all negative.  by the time the tests were performed, though, i was already on the gluten-free diet, (and gained some weight, finally, and was able to keep food 'in' me lolz)  so, with the response to the diet <people forget that this is also used as a diagnostic criteria), and the damage shown on my endoscopy, she diagnosed me as celiac.  i wasn't ever going back to eating gluten again, because i felt so much better - she could have pronounced me aphrodisiac lolz still not eating gluten.  if i was ever on the fence about it, i am sure now that i made the right choice.  a myriad of maladies have resolved with this diet.  good luck!    and welcome to the club you never wanted to join 

[cyclinglady]

I'm diagnosed with celiac disease (mild positive on blood, biopsy: Marsh Stage IIIB), but my husband is not.  He's been gluten-free for 12 years based on his GP and my allergist suggesting he lay off the wheat to relieve body aches, flu-like symptoms, and chronic sinus conditions.  It was a tough first year, but he's been completely compliant and feeling great since then.  He'd never do a gluten challenge to get a formal diagnosis of either celiac disease or a gluten intolerance. 

 

My cousin's biopsy showed only inflammation, so she's off gluten based on her Mom being gluten free (no formal diagnosis).   She too, thinks she has an intolerance or just the start of celiac disease.  Again, she's gluten free and feeling good.

 

So, it not always necessary to have a diagnosis -- though it can help more people to comply.