Help! Positive Blood Test For Celiac, But Nothing Abnormal On Biopsy. Advice Please!

[Valerie2622]

So for those of you who saw my previous post, I made sure to eat gluten before my blood test for celiac disease, which did come back positive. Therefore we moved on to the endoscopy and colonoscopy, which went smoothly. I made sure they would take enough biopsies of different places. Then the results came in, saying I'm "normal". I'm ninteen years old so maybe there isn't enough damage to show up yet? I don't know where to go from here.

Does anyone have any advice or similar experiences to share? My body feels awful- it's not in my head. Should I forget about the fact that my blood test was positive? Or that I have a zillion symptoms associated with celiac disease? I read the book Jennifer's Way and another book called Gluten Freedom to prepare for a diagnosis and so now I'm feeling sad because I just want to feel healthy but idk how.

Feel free to post here or to message me- either way. I'm very open to giving more details if that would be useful to anyone.
 

[1desperateladysaved]

Get the pathology report on your tests.  If you care to post it here, do .  Sometimes the doctor misses the celiac in it.  Infact that is occurring surprisingly often here. 

[nvsmom]

So for those of you who saw my previous post, I made sure to eat gluten before my blood test for celiac disease, which did come back positive. Therefore we moved on to the endoscopy and colonoscopy, which went smoothly. I made sure they would take enough biopsies of different places. Then the results came in, saying I'm "normal". I'm ninteen years old so maybe there isn't enough damage to show up yet? I don't know where to go from here.

Does anyone have any advice or similar experiences to share? My body feels awful- it's not in my head. Should I forget about the fact that my blood test was positive? Or that I have a zillion symptoms associated with celiac disease? I read the book Jennifer's Way and another book called Gluten Freedom to prepare for a diagnosis and so now I'm feeling sad because I just want to feel healthy but idk how.

Feel free to post here or to message me- either way. I'm very open to giving more details if that would be useful to anyone.

 

The experts call your situation latent celiac, which basically just means it is probably early celiac.  If you continue to eat gluten it is expected that your health will decline with more symptoms and you will eventually show damage to your intestines... which frustrates me to no end.  In order to get an "official" diagnosis, you need to get sicker - a terrible system. It is also maddening to me that the doctors focus so much on the intestinal damage in celiac disease. Yes, that certainly causes problems but I really doubt that my blunted villi caused my arthritis, migraines, mouth sores, and mental slip.  

 

Sorry for the rant.  If you have positive auto-antibodies, and there is no sign of any other disease that could have caused it (which happens in a tiny minority of cases - <5%), then you have celiac disease.  Think of it like a pregnancy test - a positive is a positive right?  But different ladies will show at different times in their pregnancy. If you don't show until your 6th month, it doesn't make you any less pregnant.

 

The biopsy misses approximately 20% of all celiacs.  That's 1 in every 5!  You might not even have latent celiac, you could have intestinal damage and they missed it, as deperateladysaved mentioned.

 

It's not in your head.  I would guess half of all the posters around here only signed up because they were having a hard time getting a diagnosis. The rest are here for support. I honestly think that being told "it's all in your head" should be a sign of celiac disease.   You are sick with celiac symptoms, you have positive celiac disease tests - you have celiac disease.  The doctors may not be willing to sign off on that yet but you'll need to make yourself sicker in order to get them on board... You probably do not want to do that at this point.

 

If people ask, tell them you had positive celiac tests so you need to eat gluten-free.  It's all true. Hopefully you'll be able to get the support you need from those around you in order to get healthy.

 

In the meantime, celiacs are often low in some nutrients that you might want to get checked: Ca, Cu, Mg, K, Fe, zinc, A, D, B12, ferritin.  Also, hypothyroidism is found in 10-15% (I believe) of celiacs so you'll want to keep an eye out for signs of that.  Going gluten-free does not assure that this will never show up either.  The best tests for thyroiditis are TSH, Free T4, free T3, TPO ab.

 

 If you decide to go gluten-free now (and I think you should) be aware that some people go through a withdrawal and often feel worse before they get better. And dairy intolerance is common so you may need to drop milk if your symptoms do not improve in a few months.

 

Best wishes in whatever you decide to do.  

[Gemini]

Valerie........for someone who is 19, you show a lot of intelligence and common sense!  So use that  and listen to nvsmom.  You have Celiac if your blood work was positive and yes, you may not have accrued enough damage for them to find yet so consider yourself lucky.  I won't go into a second rant about that because Nicole did such a good job, I won't repeat what she said except to say that I was not diagnosed until I was 46 years old and was told for a long time it was in my head.  In that time span, I developed 3 more autoimmune problems from undiagnosed Celiac and I do not want that to happen to you.  I am doing great these days but you need to go strictly gluten free for life.  It's not hard, just inconvenient at times.  But you will get your health back and that is all that matters.

 

Welcome to the forum and the Celiac club!    Let us know if you need any help.

[IrishHeart]

A positive celiac blood test means celiac to me.  FWIW

 

A negative biopsy may just mean "not enough damage" YET.

 

Don't be one of us 'statistics" --the people who go most of their lives not knowing we had it while making our lives a living hell. Some of us were dying from it. You have been a given the opportunity to turn your health around

right now and get well faster because you are young.

 

You seem to be very proactive about learning all you can about celiac and following a G F diet for optimal health. Good on you!

 

Consider yourself a celiac, eat healthy food and live a long and happy life!

 

If you want a bit more confirmation, have the doctor run a celiac genetic test. 

 

We're here if you need us, but I'm going to point you to this thread and tell you...welcome to the celiac family.

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

I also suggest the book Real Life with celiac Disease by Melinda Dennis and Daniel Leffler.

 

That should give you a ton more info and make you truly aware of all aspects of the disease and managing it well. Good luck, hon.

 

PS. Your picture made me smile. I looked very much like you as a teenager...not kidding.  

[Valerie2622]

To all who have responded, please know that all your wisdom and willingness to help means the world to me. I sent my doctor a message asking them to please send me the pathology of the tests.

Even if those tests do end up showing absolutely no damage, I can see how Celiac disease could still be what I'm dealing with. Especially since I've been having various tests all year and this is the second one to come back positive. (The other test that came back positive was lactose intolerance)

I also was put on prescription strength vitamin D a while back because it got below the normal range. Now I'm the lowest that I can possibly be while still being considered "fine". (Reference range 33-100 and I'm 33)

I'll post as soon as my doctor sends me the pathology for the tests.

Keep responses coming- they've been so meaningful!!

[Gemini]

As I said before, Valerie......you are a smart cookie and are picking up really quickly on all this.  Lactose intolerance goes hand in hand with newly diagnosed celiac disease as the enzyme that breaks down lactose is made in the tips of the villi.  When they become damaged, you end up lactose intolerant also.  That happened to me.  Many people, especially the younger ones, will get back the ability to digest dairy, once their villi heal.  For me, I still have to stick to dairy lite and watch amounts I eat because I went so long without a celiac diagnosis.  This is all so good that you have found out so early in life!  You will avoid much of the pain and misery many of us have gone through.

 

Post yout test results if you feel comfortable doing so but start your gluten-free life now.  You will probably be amazed, as many of us were, at how many of your problems are being caused by celiac!

 

The Vit. D thing.......it will take a while to bump those numbers up so have patience.  It is also a good idea to get enough sun to manufacture Vit. D the normal way.  It can be difficult if you live in the northern climes. I think you need about 20 minutes per day, without sunscreen on. Then you can apply that sunscreen.  But your gut will need to heal before much of what you take in with supplements will be absorbed.

[ravenwoodglass]

As others have stated positive blood trumps negative biopsy. You can start the diet today. Some doctors will give you an 'official' diagnosis with positive blood tests and response to the diet. Hope you are feeling better soon. 

[GottaSki]

Welcome Valerie!

Not much for me to add except...request both the pathology and procedural reports from you endoscopy. Sometimes the procedural report will have observations by the doctor that he/she didn't think were important to pass along to you, their patient. The pathology report has other valuable information.

if you post it in this thread...there are several of us that will see it and can interpret for you.

Well done.....always important to question our medical staff

[Jmg]

Valerie I found this presentation by Dr Fassano really useful in explaining some of the complexities around this condition:  

 

It's a long watch, but if you skip to 55minutes he talks about diagnosis, including the percentages of celiac patients who do not show on the biopsy. Obviously you should speak to your Dr but it may be that with a positive blood test and response to gluten you may still be diagnosed as celiac.

[cyclinglady]

Even if your doctor refuses to officially diagnose you with celiac disease (and he/she should based on your blood test), I think you should go gluten-free. I have an officially diagnosis, but my husband does not. He went gluten-free 13 years ago per the advice of his GP and my allergist. Wish now that we have a diagnosis (or maybe not for things like life insurance).

The bottom line is that gluten makes him sick!

BTW , my blood test was barely positive, but my biopsy showed a Marsh Stage IIIB. Go figure!

I wish you well.

[Valerie2622]

I would adore having an "official" diagnosis because my parents would be much more likely to become "on board" with all of this. Support is important even though I know there will be people in my life who are skeptical. 

The video of Dr. Fasano fills me with hope that the waiting-for-diagnosis game that I've been playing could be over soon. It reminded me that I did a cleanse for yoga a while back that was three weeks long. Part of the requirements were no dairy and no gluten. I do remember my mom commenting afterwards that I had more energy while I was on the cleanse. I remember feeling slightly less depressed/anxious. 

 

I did send a message to my doctor on Friday, requesting the pathology for the tests. Since it was a Friday and I haven't received any response, I think I'll end up having to wait until Monday for a response. 

That being said, I'm going to call the doctor's office either way bright and early Monday morning and request the genetic testing. Could I go gluten free even while waiting for the genetic test? I can't think of a reason why not, but I'm just triple checking. 

Cyclinglady: I'm glad you were able to get diagnosed. My blood test said "43", with the normal range being 0-15.  That's why I was a rather surprised when I was told my biopsies were "normal". 

For anyone out there who would find it interesting, my symptoms are as follows (all of which have been going on for over a year)

 

-constipation

-diarrhea

-abdominal bloating/pain

-nausea

-fatigue (last night I slept 15 hours, still tired. Not rare for me unfortunately)

-anxiety

-depression

-autism

 

GOOD NEWS: After typing all of this up, I explained everything to my mom and she said we will go tomorrow if not today to Whole Foods to buy  gluten free dairy free food.

I will update everyone about anything/everything that I discover. Thank you to everyone who has taken the time to post such thoughtful responses. I feel calmer knowing that there are people like you all out there who understand what I'm dealing with. 

Again, if anyone wants to message me because they don't feel comfortable posting to the world, I look forward to hearing anything you have to ask and/or say. 

[IrishHeart]

I have met Dr. Fasano and I think he'd be the first to say that if gluten makes you feel bad, you should not be eating it. He is truly the  celiac/NCGS community's  hero.

 

You do not need to be consuming gluten for a genetic test, hon. Your genes are your genes and they do not vary because of the amount of gluten antibodies in your body.

 

The symptoms you list are all ones the vast majority of us can relate to before diagnosis.

 

You can look forward to those resolving in the months to come. 

 

Best wishes to you!

 

P.S. There are many chefs/bakers who are gluten-free and DF..., You can check them out for recipe ideas.

Some of them are::

 

Jules Shepherd

Karina at Gluten free Goddess

Elana Amsterdam

 

for main dishes the whole family can enjoy;

 

Open Original Shared Link

[Valerie2622]

I was pretty sure that was the case about the genetic tests but I thought it would be a good idea to just make sure. Thanks so much, IrishHeart. Ooh, recipe ideas- sounds awesome!!

When explaining to friends and people that aren't as informed, would it be appropriate to say I have celiac disease considering I do not have the "official" diagnosis yet? Either way at least I know what to do to begin feeling better. Although isn't there a possibility I could have some withdrawal symptoms at first? I believe I read that somewhere. Probably in Jennifer's Way.

[Jmg]

Valerie from what I've read negative biopsy notwithstanding your possibly positive for 3 or maybe 4 of the 5 criteria for celiac mentioned in the video:

 

Signs symptoms of celiac disease

Blood test

Positive Biopsy

DNA

Positive reaction to gluten-free diet

 

You may be one of the 20% who don't make all 5 but still have celiac. Or as others have said you may have caught this before the intestinal damage. Have you had a follow up meeting with your Doctor to discuss the biopsy results? It could be they would be willing to diagnose on the same criteria as Dr Fassano outlines and the positive DNA and/or reaction to a gluten-free diet could get you the diagnosis. Maybe you can follow up with them first and if they feel the diagnostic route is exhausted you could then consider self diagnosing as having a problem with gluten and going on the diet regardless. That's my plan if my biopsy is negative as I've now got sufficient personal correlation of the negative effects of gluten on me.

 

As for family and friends, if and when it comes to it if I don't get a definitive diagnosis I'm still probably going to tell people I have celiac, as that's how I'll be living and I don't want to waste time and energy discussing the various spectrums of gluten sensitivity.

 

Best of luck, hope your feeling positive - it's great your finding this out now and not in 20 years!  

[IrishHeart]

I was pretty sure that was the case about the genetic tests but I thought it would be a good idea to just make sure. Thanks so much, IrishHeart. Ooh, recipe ideas- sounds awesome!!

When explaining to friends and people that aren't as informed, would it be appropriate to say I have celiac disease considering I do not have the "official" diagnosis yet? Either way at least I know what to do to begin feeling better. Although isn't there a possibility I could have some withdrawal symptoms at first? I believe I read that somewhere. Probably in Jennifer's Way.

 

 

There is no real medical or scientific basis for "gluten withdrawal". I have read every bit of literature on this subject.

Trust me on this.   You said you felt better off gluten before...so. just be positive about it and go forward. 

 

If anyone asks, you say this : "I tested positive for celiac."  

That's it. The End.

 

your blood panel for celiac was positive, therefore....

 

It's the truth. 

[GottaSki]

 

If anyone asks, you say this : "I tested positive for celiac."  

That's it. The End.

 

your blood panel for celiac was positive, therefore....

 

It's the truth. 

This is exactly how I would phrase your situation as well

[nvsmom]

Yep, I agree, you tested positive for celiac disease. keep it simple.

 

About the withdrawal, I believe I have read in a couple of spots (not sure where - Wheat Belly?, Dr Green's book?) that up to 30% of celiacs go through a withdrawal for a few days to a few weeks when they go gluten-free.  I don't believe that it is actually a withdrawal to the gluten, but more likely has something to do with cutting wheat, rye, and barley from your diet, or maybe it is just from cutting carbs.... I don't know.  

 

Just remember that not everybody goes through it. I experienced withdrawal or something when I went gluten-free.  I felt worse than when I gave up coffee, but it is not that hard. It was not a fun week or so, but it was manageable. Hopefully you will feel perfectly fine and start feeling better right away.

[GFinDC]

HI Valerie,

 

I suggest you consider yourself celiac based on the positive blood antibodie results.  The endoscopy results are not always positive for various reasons.  For one thing they can only reach the first 5 feet or so of the small intestine.  But the small intestine is around 20 to 22 feet long.  So they aren't even testing the majority of it for damage.  You could have villi damage at 6 feet and the doctor would never see it.

 

Antibodies aren't present for no reason.  The immune system learns to make them in response to an irritant.  And the immune system learns real good.  It doesn't forget to make antibodies just because your doctor says something.  It'll keep making antibodies and fighting the gluten for the rest of your life.  Whenever you consume gluten the antibodies will kick into action and their lifetime is weeks to months.  So small amounts of gluten can cause weeks of symptoms.

 

Otherwise it's all a lot of fun tho.    Eating gluten-free gets easier after you've got some experience at it.  Some people find that staying away from processed foods for the most part and eating whole foods instead is better at the beginning.  The fewer processed foods we eat the less chance of gluten sneaking into the diet there is.

[Valerie2622]

I have a follow up appointment with my doctor on August 13th (it's difficult to get appointments with them, but when I call on Monday about genetic testing, I'll see if anyone has cancelled so perhaps they could fit me in sooner)

This morning I spent two hours at Whole Foods, where I found many gluten free dairy free products. Day 1 is going well. I'm so excited to try this recipe:

 

Open Original Shared Link

 

In general, I really recommend their site because I know the lady that created it. She's amazing.
I LOVE the idea of simply answering people who are nosy with just "Oh, I tested positive for celiac disease."   Perfect solution- thank you.

I look forward to letting everyone know what ends up being the outcome of the call I shall put into the doctors on Monday morning. 
I'm thinking of taking a trip to The Container Store today because I need a new lunch tote and tupperware. 

nvsmom: I love the quote that you have there- "acceptance is the key to happiness"   That is sooo true.
 

[SMRI]

When you call on Monday, ask if they will just order the genetic testing.  Often you can go in and just have labwork done without seeing the doctor, then the results will be there before you go back in August.

[ravenwoodglass]

If you get the genetic testing keep in mind that they only test for 2 genes and there may be more associated with celiac. Don't let a negative gene test convince you that the positive blood work was wrong. It is rare but there are celiacs that don't carry either of those genes. 

[nvsmom]

 

nvsmom: I love the quote that you have there- "acceptance is the key to happiness"   That is sooo true. 

 

 

 I got that off of a fortune cookie a good decade ago. It is yellowed with age but still taped to my fridge.  LOL 

 

I always interpreted  it as meaning I should still try to change the things that don't work for me, but I need to accept that not everything is going to go my way - I need to make the best of what I have to work with.  

 

So, is that Day 1 eating gluten-free, or day 1 of waiting to see the doctor and continuing with the gluten challenge? I'm just asking because that recipe you posted has whole wheat flour - definitely not gluten-free.  And since your celiac testing is complete, it is safe for you to go gluten-free now.

 

How about these bars instead? Open Original Shared Link

[Valerie2622]

I see why gene testing is not the be all end all. I also don't want the doctors to have info to use against me when I try and get an official diagnosis, so hopefully I have the "right" genes. Hehe

As far as the chocolate chip bars go, I made sure to substitute almond flour because today has been the first day going gluten free dairy free. I wonder if it's possible to feel better on day one. Well, either way the cupcake store I discovered (through the Healthy Villi's site) turned out to be amazing. People were so understanding and accepting, but also their gluten free dairy free cake pops are delicious.

[Valerie2622]

UPDATE: Spoke to my g.i. docor's nurse today. They aren't too into the idea of genetic testing because they don't believe I have celiac disease since the endoscopy didn't show anything interesting. At the same time, they want to have a second opinion from another doctor. I don't know what that's about or when that will happen. The nurse really wants me to get my thyroid checked because apparently testing positive for celiac disease on the blood work can mean other things besides celiac disease. 

 

At the same time, this nurse advised me to try going gluten free dairy free for a week and then to call her back. Good thing I have an appointment with the doctor on August 13th, because the nurse confused me a bit. 

 

Anyways, this is my second day being gluten free dairy free. Since beginning, I haven't had any of my daily stomach pains. Not sure if that's a coincidence or not.