New- Understanding Labs

[Mom-of-Two]

I have been having symptoms for a few years now, off and on, that I saw my dr for a few times. She told me it was IBS, I tried the treatments she suggested including probiotics, lots of fluids, and fiber. I returned to her prior to the holidays and she ran more aggressive blood work and sent me for an abdominal u/s to rule out any organ issues (gallbladder particularly). All was fine, when I went to my follow up appt with her, she told me I have Celiac Disease- based on my celiac blood panel, and has me seeing a GI doc. I cannot get into this particular GI doc for another 6 weeks, but I am trying to see another GI doc that specializes in Celiac, based on a friend's recommendation.

I am trying to wrap my head around all the information I have been researching. My primary dr said I may not need an intestinal biopsy because my Celiac panel numbers are so high, that there is no room for question. However I have read that a biopsy is necessary to make the diagnosis. I do NOT have any nutrient deficientcies and my iron levels have never been low. Here are my lab results: I am abnormal on 4 of the 6 tests, the reference range in ().

IgA- 228 (70-400)

Endomysial Ab IgA- POSITIVE

Deamidated Gliadin Abs IgA- >150 (0-19)

Deamidated Gliadin Abs IgG- 24 (0-19)

t-Transglutaminase IgA- 84 (0-3)

t-Transglutaminase IgG- 2 (0-5)

Does anyone have insight on these numbers and what they mean? The GI doc won't answer any questions until my visit and they suggested NOT changing my diet until I have the appt with him.

I feel overwhelmed. I want to get my two children tested as well, for piece of mind.

Do those numbers mean I absolutely have Celiac- if I had an intolerance to gluten only, I would not have a strong immune response (as in the case of Celiac), is this correct?

[Metoo]

I have been having symptoms for a few years now, off and on, that I saw my dr for a few times. She told me it was IBS, I tried the treatments she suggested including probiotics, lots of fluids, and fiber. I returned to her prior to the holidays and she ran more aggressive blood work and sent me for an abdominal u/s to rule out any organ issues (gallbladder particularly). All was fine, when I went to my follow up appt with her, she told me I have Celiac Disease- based on my celiac blood panel, and has me seeing a GI doc. I cannot get into this particular GI doc for another 6 weeks, but I am trying to see another GI doc that specializes in Celiac, based on a friend's recommendation.

I am trying to wrap my head around all the information I have been researching. My primary dr said I may not need an intestinal biopsy because my Celiac panel numbers are so high, that there is no room for question. However I have read that a biopsy is necessary to make the diagnosis. I do NOT have any nutrient deficientcies and my iron levels have never been low. Here are my lab results: I am abnormal on 4 of the 6 tests, the reference range in ().

IgA- 228 (70-400)

Endomysial Ab IgA- POSITIVE

Deamidated Gliadin Abs IgA- >150 (0-19)

Deamidated Gliadin Abs IgG- 24 (0-19)

t-Transglutaminase IgA- 84 (0-3)

t-Transglutaminase IgG- 2 (0-5)

Does anyone have insight on these numbers and what they mean? The GI doc won't answer any questions until my visit and they suggested NOT changing my diet until I have the appt with him.

I feel overwhelmed. I want to get my two children tested as well, for piece of mind.

Do those numbers mean I absolutely have Celiac- if I had an intolerance to gluten only, I would not have a strong immune response (as in the case of Celiac), is this correct?

You have Celiac based on your blood panel. If the doctor is willing to diagnose you with Celiac without a scope, then you have an official diagnosis of celiac you don't need the scope. The GI doctor will probably want to do the scope to once again prove you have celiac you will have to be eating gluten when you go for the scope. I don't know if there is any benifit to doing the scope since your doctor is giving you a diagnosis.

You should have your children tested. Its genetic, so if you have celiac chances are they do too, I think its a 1 in 3 chance.

[researchmomma]

I have been having symptoms for a few years now, off and on, that I saw my dr for a few times. She told me it was IBS, I tried the treatments she suggested including probiotics, lots of fluids, and fiber. I returned to her prior to the holidays and she ran more aggressive blood work and sent me for an abdominal u/s to rule out any organ issues (gallbladder particularly). All was fine, when I went to my follow up appt with her, she told me I have Celiac Disease- based on my celiac blood panel, and has me seeing a GI doc. I cannot get into this particular GI doc for another 6 weeks, but I am trying to see another GI doc that specializes in Celiac, based on a friend's recommendation.

I am trying to wrap my head around all the information I have been researching. My primary dr said I may not need an intestinal biopsy because my Celiac panel numbers are so high, that there is no room for question. However I have read that a biopsy is necessary to make the diagnosis. I do NOT have any nutrient deficientcies and my iron levels have never been low. Here are my lab results: I am abnormal on 4 of the 6 tests, the reference range in ().

IgA- 228 (70-400)

Endomysial Ab IgA- POSITIVE

Deamidated Gliadin Abs IgA- >150 (0-19)

Deamidated Gliadin Abs IgG- 24 (0-19)

t-Transglutaminase IgA- 84 (0-3)

t-Transglutaminase IgG- 2 (0-5)

Does anyone have insight on these numbers and what they mean? The GI doc won't answer any questions until my visit and they suggested NOT changing my diet until I have the appt with him.

I feel overwhelmed. I want to get my two children tested as well, for piece of mind.

Do those numbers mean I absolutely have Celiac- if I had an intolerance to gluten only, I would not have a strong immune response (as in the case of Celiac), is this correct?

To help you better understand your test results and your Celiac diagnosis, I recommend the book Healthier Without Wheat. Irish Heart on this Forum recommended it to me and I read it less than a day! It will explain why you are CLEARLY Celiac with this blood work.

Definitely get your children tested. Just know that a diagnosis is not always easy.

Others with more experience will chime in but I HIGHLY recommend that book (thank you IH).

Ask all your questions on this forum, there are amazing people on here ready to help you.

[Skylark]

Yowza. You are celiac.

IgA- 228 (70-400)

-- This is not strictly a celiac test. It checks whether you make normal amounts of IgA (mucosal antibodies). You do, so your doctor reads the IgA part of the celiac panel rather than the IgG.

Endomysial Ab IgA- POSITIVE

-- autoimmune antibody, 100% specific for celiac disease

Deamidated Gliadin Abs IgA- >150 (0-19)

Deamidated Gliadin Abs IgG- 24 (0-19)

-- tests to see if you react to a special form of gluten only created in the celiac intestine. Also 100% specific for celiac disease and you are making both forms of antibody.

t-Transglutaminase IgA- 84 (0-3)

-- another autoimmune antibody, usually caused by celiac

t-Transglutaminase IgG- 2 (0-5)

-- with normal levels of IgA this test is not considered at all because it's almost always negative. Your doctor would have looked at this if your IgA were low.

The "gold standard" is blood+endoscopy, but there is no question you are celiac becasue you are actually strong positive on every single IgA test, plus showing some anti-gliadin IgG. The chance of all these tests coming back so high and you not being celiac is probably similar to the chance of being struck by lightning. You can talk to your GI about whether he wants to see how bad the damage is, mostly to track your recovery. On the off chance you have very little damage on endoscopy, it only means that the autoimmune damage hasn't had enough time to get going severely. People with this sort of antibody result who are followed in studies eventually develop villous atrophy.

Yes, your children need to be tested. Remember though that like you they can start life able to eat wheat and develop celiac later on. It is probably good to feed them a low-gluten diet even if they test OK now.

[Mom-of-Two]

Wow, thank you for the replies. I am so overwhelmed, which I assume is a normal response. I am even more overwhelmed at the thought of my children having it, or wondering when they will get it, even if they test negative now. I knew the numbers were high, but my dr wasn't too aware of any of it to be honest (which is common I guess) and just has me going to the GI- long wait to get in to see him which is driving me nuts.

My son has a well visit in Feb so I will ask the pediatrician about having both children tested.

I guess it is more shock than anything, because while my symptoms have been bothersome, my day to day has not been affected by the symptoms, I do not have nutrient deficiency or anemia, and am otherwise quite healthy. I never get sick, and seem to have a very strong immune system, I would be surprised by that if my intestines have a great deal of damage, since so much of your immune system lies in the gut.

People with this sort of antibody result who are followed in studies eventually develop villous atrophy. -----what does this mean???? What if that was the case with me, do the villi not heal themselves with a gluten free diet?

It is all very confusing, and I assume it's normal to feel this way, but wow. I am struggling with it.

Thanks again, you all seem to be very helpful here and I hope to find myself here daily!

[Skylark]

People with this sort of antibody result who are followed in studies eventually develop villous atrophy. -----what does this mean???? What if that was the case with me, do the villi not heal themselves with a gluten free diet?

Oh, sorry. That wasn't clear at all! What I was TRYING to say is that you need to be gluten-free no matter the biopsy results. Some doctors tell people with antibodies and an OK-looking biopsy to keep eating gluten. Celiac is progressive, so antibodies can show up first and if people with a lot of antibodies keep eating gluten atrophy usually develops. Gluten-free heals the villi.

Once you talk to a GI and go gluten-free I think you will be pleasantly surprised how much better you feel. (As you've been advised, don't go gluten-free until you see the GI.) The IBS should go away and you might discover that you feel even better.

Yes, being overwhelmed is completely normal. It's a big diet change and you have to give up a lot of foods you've eaten all your life. There is always some grief. You might have some of your wheat favorites now, and start researching the diet so that you're prepared after the doctor appointment.

[ravenwoodglass]

I agree with the others that you are without a doubt in the right place. You may want to call the GI doctor's office and ask if you can get on the cancellation list if your schedule is flexible enough to go in on short notice. In my humble opinion it is up to you whether you want to scope or not as you do need the diet no matter the results. If damage is patchy it can be missed and some doctors want the villi totally destroyed before they will say 'yup it's celiac'. There have been doctors who have found low level villi damage and actually told people to keep eating gluten and to come back in a year and they would rescope to see if the damage was then severe enough to give them a diagnosis.

Do get your children tested as celiac can cause issues with growth, learning, mood and much more. If they are negative on testing but having any issues do a dietary trial with them just to be sure that gluten isn't an issue as children have a higher rate of false negatives than adults and the rate for adults is about 20 to 30%.

You can learn more here about how to follow the diet than most doctors will know so do read as much here as you can and ask any questions you need to while you wait for your appointment.

It is overwhelming at first but we are here to try and help you through it.

[Mom-of-Two]

Thanks again

So, basically I am seeing the GI dr (with a specialty in Celiac) on March 1st so I have to wait until then to go gluten-free and I am in more discomfort than I have been thus far. But, it's a great dr and that wait time is normal it seems from the calls I have made, I did ask and the office put me on the cancellation list if anything comes up.

I called my pediatrician and she actually wants the kids to be tested through a pediatric GI dr, she just thinks it's better that way since a GI dr would continue treatment in the event they test positive. I have to call Monday and get that appt set up.

This may be a stupid question but while I am not going gluten-free prior to my GI appt, I have cut way back since I know what the problem is, while I am eating gluten every day there has been no more big pasta meals for me but my stomach pain is worse than ever, and tonight for example we had friends over- we made mexican for dinner, chicken with rice and veggies, homeade salsa and guacamole, with some natural corn ships (certified gluten-free). So, the entire meal was gluten-free and I have my usual stomach pain that goes into my back, and am sitting here with my stomach feeling like 9+ months pregnant.

Is this just the inflammation in my intestines? Is it hurting me worse to cut down on gluten, yet still leave some in my daily diet?

[Skylark]

You poor thing. Yes, it's the damage and inflammation. Many of us notice stronger reactions to gluten once we're eating less of it. Around here we think while you're eating a lot of gluten your immune system sort of goes into overload and doesn't mount a very effective attack. Eating less means your immune system isn't as overwhelmed, and the symptoms from gluten can be stronger.

If you really want the endoscopy while you're eating gluten, your primary care Dr. might be able to prescribe an IBS drug or an antispasmodic like Bentyl to get you through to March. We've had other folks on the board whose doctors gave them helpful stuff during gluten challenges. It's worth giving a call and asking.

[Mom-of-Two]

Another question is, should I finish my own testing before taking my kids to the pediatric GI to be tested? There is really no reason to wait since I got such positive blood results, correct?

I am just anxious about them now, as a mom I would rather endure anything myself than have my kids have something I know it is a do-able lifestyle and they may very well not have Celiac, however I would like peace of mind I think. Also, should I have them gene tested as well as a Celiac panel, or is that something the pediatric GI will decide?

My second question/questions are about the health complications of Celiac- since I do not know how long I've had it, I don't know how long I've been undiagnosed. My first attack I call it, was 2 years ago and I have seen my dr a few times since being diagnosed with IBS, etc. So at least a few years. As a backstory, I had abdominal surgery 5 years ago this month- I had a ruptured appendix but they went forward with laproscopic removal (not knowing for sure it was already ruptured). An hour or two after the surgery, my BP dropped and heartrate went through the roof (as high as 180) and they said I was in septic shock, they were taking me back for open surgery to remove the infection (absess). I was in the ICU/cardic unit for 4 days and then in the hospital another 4 days, I was of course pumped with IV antibiotics, but then came home with oral antibiotics, a few days after being released found my incision was infected, they had to cut open a small hole and put in a tube to drain (sorry ick!) so I had TONS of antibiotics and the stress from this ordeal was massive (I had a 2 year old at home I had never been away from). I have NO DOUBT that this is when my Celiac came to be, 4 months later I was pregnant with my son (we had been trying a few months when my appendix ruptured) and I had him 4 years ago---so I would venture to say I have had the active disease at least 4 years. I had lactose intolerance for YEARS though, BAD- it went away with my first pregnancy, I even drank milk daily, which I had never done before.

Sorry that was a long backstory BUT my point is I feel stress and surgery with extended antibiotic use did it for me. Because I have likely not gone my entire life undiagnosed, do I have many risks for GI cancers, osteoperosis, and the other autoimmune diseases? Once you heal the intestines with diet, do you continue to have that risk of other health issues? Now that I have a diagnosis, I feel ready to take control and be the healthiest I can be, I guess I am worrying about things I have no control over, but I just want to be informed.

Thanks again!

[ciamarie]

I've been reading the book Wheat Belly, and it said that after 5 years of a gluten-free diet, one's risk of those other diseases attributed to Celiac goes down to 'normal'. So, you're not always at higher risk IF you stick with a gluten-free diet.

I also thought I'd mention that probiotics might help after all of those anti-biotics, though it was years ago and you may already have added some in afterwards.

[Skylark]

Yes, take your kids in. The pediatric GI will probably be interested in your results but it doesn't change whether there are antibodies in the kids' blood.

Most of what I've read says the longer you're undiagnosed celiac, the worse the health problems get. It is very reasonable to guess that the surgery and antibiotics triggered your celiac so you've only had it for four years. Healing your intestines gluten-free takes your risk for cancers and deficiency diseases back to normal.

You may be at risk for other forms of autoimmunity if they wiped out your GI bacteria too thoroughly. You might read the GAPS diet book. Open Original Shared Link is where you get it. It's a real eye-opener about how your body works. Autoimmunity is starting to be linked to "leaky gut" and a good part of what protects your intestinal lining are the symbiotic bacteria. I'd suggest going light on sugar and starch, developing a fondness for live-bacteria fermented foods like homemade sauerkraut, and taking a good probiotic. This website is cool for fermented foods, and the person who wrote it has a great book. Open Original Shared Link

[Mom-of-Two]

Yep, I am BIG on probiotics for alll of us, and if on antibiotics I take even more....however I wasn't as knowledgable when I had the surgery and months of antibiotics before, so I should've been adding in TONS at that time