How To Investigate A Celiac Diagnosis W/o Eating Gluten?

[NanaV]

I'm pretty sure I'm either celiac or the non-celiac gluten-reactive kind of person.

 

I've been off gluten for more than a year, a decision I came to on my own to relieve a handful of symptoms: bloating, gas, finger & wrist joint pain, fatigue, irritability, post-nasal drip & morning phlegm. These symptoms go away when I'm off gluten.

 

In the last 2 months, I've taken several travels and have eaten gluten unknowingly. The reaction begins almost by the end of the mealtime with terrible bloating and discomfort.

 

I also have severe advanced osteoporosis, diagnosed at age 32. I'm 45 now. I have tested with low Vit D and low iron. And when I take iron or calcium/mag for my bones, I get a fast gut.

 

SO, I want to find out if I'm truly celiac or not. Reason #1: so I can take it seriously enough to feel my best and Reasons #2-6: I have 5 children who have various digestive troubles, asthma, migraines, fatigue issues and I'd like to know if there's a chance that being gluten-free would help them as well.

 

Please tell me if there's a way to diagnose celiac without my having to ingest gluten again.

[kareng]

You really do sound like you could have Celiac.  Unfortunately, there isn't a way to test for Celiac without eating gluten right now. 

 

Maybe in a few years?  I saw that there is some work on a test that would sample your intestines and expose it to gluten and get a reaction.  That isn't at all a scientific explanation.  But maybe some day they will come up with that.  I have heard that they are trying to get a more sensitive blood test so you wouldn't have to eat gluten for too long.

 

But for right now, you could get a gene test.  The problem is that 30% of people seem to have this gene but most do not have Celiac.  But, if it were negative, you would have an answer.  Quest Diagnostics told me it costs about $370.

[cyclinglady]

No, I don't think there is a way around not ingesting gluten for a celiac blood test especially since you've been gluten-free for over a year. 

 

I've been diagnosed formally but my husband has not.  He went gluten-free over 12 years ago at the advice of his GP and my allergist.   He snored, had chronic sinus infections, felt like he had the "flu" and was willing to give it a try.  After a year of mis-haps, he figured out the diet and has been feeling great except when he got accidentally glutened.  So, I've been cooking gluten-free for all these years and it made my transition much easier (still went through a grieving process though).  

 

My husband refuses to do a gluten challenge -- he knows he get really sick.  I will say that my diagnosis has made it easier for friends and family to accept.  My husband had to deal a lot with "Are you sure gluten makes you sick?"

 

I have osteopenia and osteoporosis (back) and have already had a vertebrae fracture doing nothing (anemic too)!   It sounds like you do have Celiac Disease.  What ever you decide to do (challenge or not) it appears that gluten is not for you!

 

Your kids?  Get them tested for your own piece of mind.  Don't let them go gluten free until then.  

 

Good luck and welcome to the board!  There's lots of support and information here!

[WinterSong]

In order to get a true diagnosis, you would have to go on a gluten-filled diet again, unfortunately. 

 

However, you can get your kids tested. Blood tests are easy to do, and they can also have a gene test done to see if they carry the gene for Celiac (you could do the gene test as well, but that will not give you an official diagnosis). Personally, if I had kids who did have the gene, I would test them for Celiac annually. 

 

My mother went gluten free when I was diagnosed. She had all of the same symptoms as me but didn't have good enough health insurance at the time. But she takes it 100% seriously because it makes her feel infinitely better. She will not go back to eating gluten to get an official diagnosis because as far as she is concerned she has either Celiac or an intolerance. Several of my gluten-free friends have similar thoughts. 

 

There are a lot of people like this who don't have an official diagnosis. Many are either in your position, cannot afford the testing like my mother, or are testing negative for Celiac but find that a gluten-free diet resolves their symptoms. 

 

If I were you, I would declare myself a self-diagnosed gluten intolerant based on success with the gluten-free diet and the fact that you have complications that could be a result of long-term gluten ingestion. While Celiac can be diagnosed, often time a normal intolerance cannot be - you simply have to see if you feel better when you remove that food. Based on what you're saying, I'd say you should be 100% gluten free and only ever eat gluten again if you decide to do a challenge.

[mamafish]

Given your kids' issues, I'd run celiac tests on them.  If any of them get a diagnosis, that would probably encourage all of you on a gluten-free lifestyle .

[GottaSki]

I agree with both gene test for you and complete celiac antibody panel for the kids.  I was initially tested for genes as my children tested mostly negative with a wide variety of celiac symptoms...turned out I have two copies which means all of my children have at least one - it was important information for our family.

 

Talk to your primary doctor and explain the reaction when you accidentally ingest gluten thus making a gluten challenge dangerous for your health.  They may be able to order the gene test for you thus have it covered by insurance.

 

Good Luck to you and your family

[NanaV]

No, I don't think there is a way around not ingesting gluten for a celiac blood test especially since you've been gluten-free for over a year. 

 

I've been diagnosed formally but my husband has not.  He went gluten-free over 12 years ago at the advice of his GP and my allergist.   He snored, had chronic sinus infections, felt like he had the "flu" and was willing to give it a try.  After a year of mis-haps, he figured out the diet and has been feeling great except when he got accidentally glutened.  So, I've been cooking gluten-free for all these years and it made my transition much easier (still went through a grieving process though).  

 

My husband refuses to do a gluten challenge -- he knows he get really sick.  I will say that my diagnosis has made it easier for friends and family to accept.  My husband had to deal a lot with "Are you sure gluten makes you sick?"

 

I have osteopenia and osteoporosis (back) and have already had a vertebrae fracture doing nothing (anemic too)!   It sounds like you do have Celiac Disease.  What ever you decide to do (challenge or not) it appears that gluten is not for you!

 

Your kids?  Get them tested for your own piece of mind.  Don't let them go gluten free until then.  

 

Good luck and welcome to the board!  There's lots of support and information here!

Yes! It's the "are you sure?" from well-meaning people that I would love to avoid. 

 

And thanks for the advice for the kids. I've already had the 18yo go gluten-free. He's the one I'm most concerned about. Now that he's in college and competing in tournaments on weekends, his food is never 100% gluten-free. And I don't think it will be until he gets (and if he can get) a celiac diagnosis.

[1desperateladysaved]

You have a positive test result for the final gold standard, a positive response to a gluten free diet.  I did that and a genetic test to receive my diagnosis.   I also have 5 children 2 of which tested negative on celiac panels, but they have possible symptoms.   I am hoping the tests improve.  I too didn't dare do the challenge, but consequences keep me from wanting to stray.

[NanaV]

You have a positive test result for the final gold standard, a positive response to a gluten free diet.  I did that and a genetic test to receive my diagnosis.   I also have 5 children 2 of which tested negative on celiac panels, but they have possible symptoms.   I am hoping the tests improve.  I too didn't dare do the challenge, but consequences keep me from wanting to stray.

What kind of genetic test did you have? 

Do your 5 children still eat gluten?

Have you made your home completely gluten-free? This is what I'm tempted to do, but 2 of my girls run a bakery every weekend.

I'm convinced NOT to stray, but that only works if I eat at home.

[WinterSong]

What kind of genetic test did you have? 

Do your 5 children still eat gluten?

Have you made your home completely gluten-free? This is what I'm tempted to do, but 2 of my girls run a bakery every weekend.

I'm convinced NOT to stray, but that only works if I eat at home.

 

What do you mean by "but that only works if I eat at home"? 

 

I understand that eating out or at other people's homes can be hard, but if you're going to do this, you need to eat gluten-free 100% no matter where you are. It's part of the commitment you make to yourself. You can eat out and at other people's homes safely if you do research/bring food with you. 

[NanaV]

What do you mean by "but that only works if I eat at home"? 

 

I understand that eating out or at other people's homes can be hard, but if you're going to do this, you need to eat gluten-free 100% no matter where you are. It's part of the commitment you make to yourself. You can eat out and at other people's homes safely if you do research/bring food with you. 

Trust me, I want to eat 100% gluten-free all the time, but it seems I get glutened frequently when I'm out.

 

Example: this past Wednesday night I ate at our club. I know the chef & he knows me. He made me special food, even when he was serving the other 16 people at the table a set menu. I ate it all, thinking it was all gluten-free. Alas, it was NOT. I reacted by the time I was driving home that night, biggest reaction I've had in a while. Today, 1.5 days later, I'm still bloated and achy in my joints.

 

How can I trust a chef to serve gluten-free food?

 

And last week, I asked a chef to make me a gluten-free breakfast, and he served me sautéed tofu & veggies. It was delicious, but he must've thought I said vegan. Yikes.

 

These experiences have made me skeptical. Tonight I'm going on a retreat and taking all my own food.

[1desperateladysaved]

What kind of genetic test did you have? 

Do your 5 children still eat gluten?

Have you made your home completely gluten-free? This is what I'm tempted to do, but 2 of my girls run a bakery every weekend.

I'm convinced NOT to stray, but that only works if I eat at home.

I ordered a test from a company that does mail order tests.  The forum won't allow me to disclose their name.  I had a great experience with the company.  Since my blood tests were 4/4 gene alleles, they later told me that my parents each had the genes.  They were more helpful than they had to be.  Also the test involved (only) rubbing a swab in the cheek, filling out papers, and sending this to the lab.  I received my results in a few weeks by e-mail.

 

My 5 children are mostly adults and they do eat gluten when they are out.  My kitchen is completely gluten free.  I am super-sensitive and ended up not being able to handle it. so I don't buy it anymore.  Some of my children have acne problems every time they eat out.  Some also keep bread in their bedroom. 

 

I take food when I must go out. I have an oven for my car.  I take an electric skillet when I stay in a hotel.   I try to pre-warn people that have me over, so they won't be surprised that I can't eat their food.  Many people with celiac can eat food out or work with friends that can cook for them.  I always take mine with.

 

D

[bartfull]

Bring your own food or eat before going. I go places with friends and they all know that I do not eat anything I didn't cook myself at home. Yeah, it's a pain in the neck sometimes, but not as bad as being glutened.

 

I even bring my own food to Thanksgiving dinner. In my own dish, with my own silverware. I enjoy my time visiting with my friends and that is the ONLY thing that matters.

[NoGlutenCooties]

Just wanted to add that if you get your kids tested and they test positive, then you can be reasonably sure that you have it too.  At least, you're guaranteed to have the gene for it because you'll know you passed it on to your kids.  (unless their father has the same issues)

[NanaV]

Just wanted to add that if you get your kids tested and they test positive, then you can be reasonably sure that you have it too.  At least, you're guaranteed to have the gene for it because you'll know you passed it on to your kids.  (unless their father has the same issues)

Yes! This is my plan. I get my 15yo daughter's results this week. I'm feeling so impatient.

 

And if she's negative, I'll test my 6yo daughter who just this week started telling me her tummy hurts frequently. She's dairy-free but not gluten-free. And it seems that being dairy-free inspires one to ingest large quantities of gluten.

 

Husband is just honkey dory, strong as a truck. Eats enough dairy to own a milk cow and has zero problem with gluten. He does have Oral Allergy Syndrome, but that's easily managed.

[NanaV]

Bring your own food or eat before going. I go places with friends and they all know that I do not eat anything I didn't cook myself at home. Yeah, it's a pain in the neck sometimes, but not as bad as being glutened.

 

I even bring my own food to Thanksgiving dinner. In my own dish, with my own silverware. I enjoy my time visiting with my friends and that is the ONLY thing that matters.

I guess I might get to this point. I went to a buffet last night and took my own food. But when I got there, the grilled veggies and the Greek salad looked so appetizing, I indulged. I only had a tiny reaction. I'm glad it wasn't a huge reaction but then I'm still surprised that mere vegetables can somehow have gluten lurking in there.

[cyclinglady]

Ugh!  You couldn't PAY me to eat a buffet unless it was in a totally dedicated gluten free restaurant (are there even any of those around?)    Reaction or not, you are more than likely causing damage.  Each time you get glutened, it causes damage that take lots of time to heal.  Did you say you have osteoporosis?  How many fractures have you had?  How many other autoimmune disorders do you have or want to have?  That's the scary thing about uncontrolled Celiac Disease.  I know I don't want to wind up with RA or Autoimmune Hepatitis or cancer!  Geez, I already have Hashimoto's and that drove me crazy the last two years (hyper and hypo swings) and  anemia made me so weak!  

 

I'm not trying to scold you, but you sound like my husband.  He was not formally diagnosed and that first year he continued to "cheat".  I suppose my nagging and the experience of feeling good when he finally made the commitment (symptoms: sinus infections, achy joints, flu-like symptoms) finally caused him to be on board.   

 

It's been since June since I fractured a vertebrae doing NOTHING!  I got on my bike for the first time and rode to the beach yesterday.   My biggest fear?  Failing and breaking a hip!  Wouldn't that be lovely right before the holidays?   Hopefully, my gut has healed so that I'm  absorbing calcium and I have strengthened my bones with lots of weight-bearing exercise.  The bike ride was so nice.......it was worth the risk (fortunately, I'm a pretty skilled rider).  

 

Please think of the long term consequences!  I wish you the best.

[GF Lover]

 The "B" word.  Buffet = so many ways it can be contaminated that my head is spinning with the countless calculations needed to trace back every single person who may have contacted my food.  But that's just me

[NanaV]

Ugh!  You couldn't PAY me to eat a buffet unless it was in a totally dedicated gluten free restaurant (are there even any of those around?)    Reaction or not, you are more than likely causing damage.  Each time you get glutened, it causes damage that take lots of time to heal.  Did you say you have osteoporosis?  How many fractures have you had?  How many other autoimmune disorders do you have or want to have?  That's the scary thing about uncontrolled Celiac Disease.  I know I don't want to wind up with RA or Autoimmune Hepatitis or cancer!  Geez, I already have Hashimoto's and that drove me crazy the last two years (hyper and hypo swings) and  anemia made me so weak!  

 

I'm not trying to scold you, but you sound like my husband.  He was not formally diagnosed and that first year he continued to "cheat".  I suppose my nagging and the experience of feeling good when he finally made the commitment (symptoms: sinus infections, achy joints, flu-like symptoms) finally caused him to be on board.   

 

It's been since June since I fractured a vertebrae doing NOTHING!  I got on my bike for the first time and rode to the beach yesterday.   My biggest fear?  Failing and breaking a hip!  Wouldn't that be lovely right before the holidays?   Hopefully, my gut has healed so that I'm  absorbing calcium and I have strengthened my bones with lots of weight-bearing exercise.  The bike ride was so nice.......it was worth the risk (fortunately, I'm a pretty skilled rider).  

 

Please think of the long term consequences!  I wish you the best.

Well, now I know. The freshly grilled asparagus & eggplant & peppers---it was too much temptation. And it was from a fine Italian place that was serving just 100 people, not like those buffets that sit all day with people mixing the tongs and breathing all over them. Yuck.

 

I'm right now dealing with such widespread body aches that I fear I have RA. My hands, fingers (esp thumbs), wrists ache & sometimes throb. My feet, randomly a bicep or shoulder or neck will ache. Crazy. I have to hold heavy things with 2 hands, and I'm only 45. But I'm 98% gluten-free, I think! I don't know how to eat any better than I do. (Well, unless I had a personal chef.)

 

I've only had 1 fracture, a compression in T11. Lost 1" in height at 33 years old. I think I've broken ribs twice. Now, the ball of one foot has been so sore lately, I'm wondering if I have a stress fracture there.

[cyclinglady]

100 people?  It only takes one gluteny kid to spread crumbs in your own kitchen!  

 

Seriously, you have to hit 100% -- not 98% to be gluten free.  I think that you'll find your RA  or fibromyalgia symptoms will diminish or even go away completely if you are 100% gluten free.  You might have some food intolerances too (e.g. nightshades: potatoes, tomatoes, the eggplant and peppers you consumed off the buffet) that can cause RA/fibro type symptoms.  

 

You can do it!

 

Oh, are you taking supplements?  Do some research on this forum about B-12, magnesium that may help with nerve issues.  Don't forget to take calcium supplements or get them in your diet along with Vit. D to help build bones along with weight bearing exercise.

[1desperateladysaved]

I guess I might get to this point. I went to a buffet last night and took my own food. But when I got there, the grilled veggies and the Greek salad looked so appetizing, I indulged. I only had a tiny reaction. I'm glad it wasn't a huge reaction but then I'm still surprised that mere vegetables can somehow have gluten lurking in there.

I didn't really mean this as a point.  I have special instructions from a doctor.  Many people eat out carefully and are fine.