leadmeastray88

Goodness, you've been through alot

Hopefully, the diet will work for you too!

Hello

I've had idiopathic nephrotic syndrome / kidney disease since I was 4. At 18 I was diagnosed with (extreme) dry eyes - cause unknown. Had tests for sjogren, autoimmune, allergy, but nothing pops up so it seems. The dry eyes are most frustrating. A lot of tiredness especially in the morning.

Since I was a kid I had a big belly. Also as far as I can remember constipation (no 2 about every 3 days at most, to get nasty in details, big large stools with float). Since not much to lose, I am now trying a gluten free diet for a week now. Third day watery poo which stopped 3 days later. As far as constipation goes it's not there atm, but it's much too early to tell any difference besides that operational change.

Just thought I would join here for now

Greetings

Hi and welcome

Have you ever been tested for Celiac Disease? If you want to get tested, you have to be consuming gluten or else they won't be accurate.

If you just decide to go gluten free that's okay, as long as you don't want testing. As for the diet, it could take a couple of weeks before you notice any significant change, but everyone's different. Good to hear you're seeing somewhat of a change though!

I also think that if you have a number, any number besides 0, that you have a problem with gluten. Does anyone else think that way?

I think that way.

Even tough my tTG was considered to be negative (anything over 4 was positive), I was a 1.

My thinking is that if I didn't react to gluten at all I shouldn't have ANY antibodies at all. To me, this says I have 25% of the antibodies needed before becoming "positive".

...But I'm no expert

Unfortunately there's no simple answer for that.

Nobody can technically prove or disprove that Enterolab is accurate - we simply don't know. There hasn't been enough research done on the type of testing that Dr. Fine performs.

Many people, including myself, have used Enterolab and are satisfied with the outcome.

I found out that according to his tests, I had active dietary gluten sensitivity and a celiac gene and one gluten-sensitive gene, and it was recommended that I go on a gluten free diet.

Since going gluten-free, the results have been absolutely remarkable. Nobody can take that away from me. Enterolab helped support what I knew already to be true when no other doctors would help me.

You will get mixed answers here But all I can recommend for ANYONE considering Celiac as a possibility is to always get official medical testing done first and foremost before trying Enterolab and/or the gluten free diet. It'll save a lot of confusion and second guessing in the future if symptoms don't resolve, simply because nobody actually knows the relevance of Enterolab.

You be the judge

Hello. I am new here. My daughter is 7 and has a positive blood test for Celiac. She had her biopsy last Wednesday and we are currently waiting for the results. I thought maybe I could ask a few questions here while we wait.

Her main symptom is constipation. She has suffered from it since she was a baby. Doctors kept telling us that it is normal and that some kids just have "functional constipation" and she might eventually grow out of it. Well, at her 7 year old check-up, they noticed that her growth has slowed tremendously. She went from the 50th % to the 5th % over the last few years. They sent us for bone age X-rays which show her as being 5 years old. Next we were sent for bloodwork, which came back positive for Celiac Disease. Within a few days we were seeing a GI doc who took her in for a biopsy that same day. When the doc came out, he showed us pictures and told us that he didn't see much damage, just some inflamation. He seemed to think that maybe she doesn't have it, but wanted to wait for the biopsy to come back before he said for sure.

Now I am confused. If she ends up NOT having Celiac, than what else could it be!?! Something is obviously stopping her from growing? Everything I have read leads me to think that she DOES have Celiac. Don't get me wrong, I don't want her to have it, but if she does, at least we will have answers. If they tell me that she doesnt' have it, I have NO idea what else could be going on with her.

Does anyone know if she can have a positive blood result, but NOT have Celiac?

Hi there!

False positives are pretty rare when it comes to bloodwork.

I think it's pretty telling that her doc noticed some inflammation. You'll have to wait and see how the pathologist reads the biopsy - remember that she's only 7. It wouldn't be surprising if she didn't have full-blown celiac disease yet, she's so young. Also, damage can be patchy and they may not have taken a part that was damaged...we have 20 feet (or something like that) of intestine so what are the chances?

I read a story on here a week or so ago where a mom took her 6 year old daughter who has positive bloodwork for a biopsy and they told her she didn't have Celiac. A year or so later they retested her and Bingo, Celiac Disease. It's progressive so if she hasn't had it long enough, they'll tell you she doesn't have it even if she really does, she just doesn't have extensive damage...you don't really want to give her gluten if its hurting her right?

Either way, I would take her bloodwork to heart and get her on a gluten free diet ASAP...you have nothing to lose! All of her testing is done so it's safe to do so now.

Welcome, you've found an amazing support group!

I'm having an allergy test done tomorrow, but I wanted to know if they can tell if I have gluten intolerance from the test.

Allergy testing is not the same thing..I'm no expert, but I know that even if your allergy test comes back normal you can still have an intolerance. The same is true for Celiac - it's not "gluten allergy", it's an autoimmune disease.

Have you tried the diet yet? If you feel better on it then you have an answer!

Hi there,

Yes reactions can be delayed.. perfect example is on Sunday I found out (after the fact) that I was glutened by my cousin who put onion soup mix on the roast that wasn't safe. I was waiting for a reaction and it didn't come.

Now, this morning (Tuesday) I'm very nauseous and have brain fog something terrible!

So the answer is yes, the reaction time can depend on the individual person - we're all different!

I am already on day two of a gluten free diet though and really want to see if this helps.

Since you are getting the capsule endoscopy you absolutely NEED to get back to eating gluten ASAP or you risk getting false negative results.

I second what Salax says.

Besides that, you'll never know if your doc even biopsied a part of your intestine that was damaged..sometimes it's patchy, maybe he didn't take enough samples, etc.

False positive bloodwork is rare, especially the tests you got.

I would highly consider getting a second opinion, or just go gluten free - and take comfort in knowing you're doing the right thing!

And it takes awhile to heal...you never know, your D may go away sooner than you think!

Don't give up and feel better

If a genetic test shows that she carries the gene isn't it safe to assume she would benefit from a gluten free diet?

Not necessarily, having the gene doesn't mean you have it or will get it, just that you may be predisposed to it. Coincidentally, the Celiac genes are also amongst the most common in general - yet not everyone has Celiac.

You're correct, she has to be eating gluten for a very long time before testing. Has she shown any improvement from the diet this far?

As for your Enterolab question, they cannot diagnose Celiac. They can however tell you if your daughter has active dietary gluten sensitivity. There is a lot of speculation on this forum regarding the accuracy/validity of this testing.

Thank you so much for your reply,I am trying to get in to my primary Dr at this moment to get tested.I also am doing self treatment and for the last 3 days have been gluten free ,i've noticed my energy level has increased and lymphnoids in armpit are starting to decrease in size.I definalty will check on the chrohns as well. Again thanks for you r support.

To get tested you must be eating gluten or you'll risk getting a false negative.

Until testing is done, eat like you normally would. Once all testing is done then you can start.

ok , thank you for explaining that. I know it may sound stupid but that didn't make sense to me, I am sorry.

I don't mean to be confused. I read the article but I guess I wanted more of an explanation. But its okay.. thanks for all the help.

Oh don't feel bad! We were all there once!

I just had an endoscopy done last Monday and I will have the results early next week. The GI doctor said everything looked normal and he is fully expecting the biopsy to come back negative (I only tested positive on a IGA anti gliadin test and have more constipation than diarrhea issues). He did tell me I could try going gluten free for 3 to 4 weeks to see if I feel better and if I don't than I know it's probably not the gluten.

Do you think it's worth it to try going gluten free? I have 5 kids so it would be a lot of work to go gluten free and change all our meals even for a month. I make 100% whole wheat bread all the time from grinding my own flour. So it would be a huge adjustment, but on the other hand I feel horrible right now. I have nerve, muscle, and joint pain and horrible fatigue. I have stomach cramps all the time.

Could my symptoms be caused by just a gluten intolerance and not celiac disease? I think it would be easier to give the gluten free diet a try if I thought it was at least a possibility.

Thanks!

You had positive bloodwork - which is rarely false (when positive)

So whether your biopsy comes back negative or positive you should definitely go gluten free for atleast a month and see if your symptoms resolve.

I had the exact same symptoms as you - and all resolved on the diet..

What is the most reliable test for a three year old? I was thinking probably a genetic screening would be the best bet but how much does it cost? Who does it? What do they look for? False positives or anything like that?

Genetic testing could be useful, however it is not diagnostic. It won't tell you if your child hs Celiac or if he/she will ever develop it...just if he/she is predisposed. Enterolab and Kimball Genetics both do screenings, not sure of the exact cost but I think Enterolab is around $100 and Kimball around $300.

How about bloodwork and/or biopsy? Does your child have symptoms?

My 2.5 year old daughter has celiac disease diagnosed last May by biopsy etc. Me and DH were tested at the time for antibodies and both negative. His father died in March from rectal cancer, made me think that DH should get genetic test. He's positive for DQ2.

He does get diarrhea occasionally and has had rectal fissures etc, we've been gluten light just because it's easier but should he be totally gluten-free now?

He doesn't cook, relies on me for our daughter's diet so I'm thinking I'll now have two gluten-free 'kids' on my hands! Any advice?

Claire

Considering he has some symptoms, I would decide whether it's important to you or not to get a clinical diagnosis. If it is, he needs to be eating gluten to get the testing done. You said he had negative bloodwork - did he have a scope as well? Sometimes there are false negative blood tests. If a clinical diagnosis is not necessary for you, since your daughter has it anyway, it may be beneficial to go gluten free and see if his symptoms resolve. It's really the best test, but he needs to be completely rid of gluten to see if it works, not gluten light.

Hope that helps

I have had a mulititude of symptoms, they are all listed in my sig line..where do you see that I have two copies of the gene, thats the part I don't understand.

This is from your first post:

HLA-DQB1 Molecular analysis, Allele 1 0202

HLA-DQB1 Molecular analysis, Allele 2 0202

Serologic equivalent: HLA-DQ 2,2 (Subtype 2,2)

That is 2 copies of the same gene

When my tTG, Candida and parasite testing all came back negative, the first thing that came out of my GI's mouth was,

"How's your family situation?

Do you fight with your family?

Does your boyfriend treat you well? Are you sure?"

And on top of all of that he refused to give me a scope because "I had already been though too much".

After I gained back all of my weight and stopped having my bathroom issues and other symptoms, my GP said "Hmm, looks like you were right all along"...

According to Enterolab's test results you have active dietary gluten sensitivity. This could either mean Celiac's or non-Celiac gluten sensitivity..the test unfortunately cannot tell us which one it is.

I have the same gene as you but only 1 copy. I am SO GLAD to see that they changed their interpretation of HLA-DQB1*0202...when I had the testing they called it a "gluten sensitivity" gene. With a right alpha allele it can become a Celiac gene. I'm glad they've specified this

What other testing have you had done previously? Have you tried the diet and seen results?

Welcome to the Club KarenFe!

As the last two posters have mentioned...welcome!

It's very likely that you have Celiac disease based on the bloodwork, especially since the tTG was so high.

The biopsy could be negative despite the fact that you have Celiac because there may not be enough damage done yet. I read a story on here where this mom got her daughter biopsied because she had positive bloodwork. The biopsy ended up negative so they said she didn't have Celiac...she got re-biopsied a year later and Voila! Celiac. It just depends on what stage of the disease you're at.

If your doc says the biopsy is negative, I'd also highly recommend getting a second opinion. Believe it or not, not all pathologists know how to read biopsies for Celiac. It's crazy how many people got the diagnosis the second time around.

Anyway, you've found a great place with tons of good info. Definitely spend as much time as you can here and fill your mind!!

Whenever I get glutened, the fatigue sort of comes and goes for a couple of days..that's hwat happens to me anyway

I know reactions can also be delayed by as much as a few days sometimes..

I received the results for my lab work late tuesday night, confirming that I have celiac disease. I sent a stool sample and a dna sample to a lab in texas (I think), in case anyone wants to know how I was diagnosed.

Unfortunately, Enterolab cannot diagnose Celiac Disease, nor do they claim to be able to on their website. All they are able to do is detect active dietary gluten sensitivity in the stool. This doesn't necessarily mean that you have Celiac or that you will develop it, just that you are reacting to gluten. Which really, is almost the same thing The treatment is the same: the gluten free diet.

Some people think that gluten sensitivity is the pre-Celiac stage. Someone else more knowledgeable will probably chime in with the specifics, but Enterolab's testing is not widely recognized by the current medical community as of yet, unfortunately. We are hoping though! It has helped many of us here. I also had the Enterolab testing done, and it helped me in the way that I know I have to have a lifelong gluten free diet or else I will be very ill. If that is all you need then Bingo, you've found your problem

However, it's clear that you have a problem with gluten given your symptoms and how they've resolved with the diet. Have you ever had the bloodwork done? If you want to get it done you need to be eating gluten, however lots of people here are comfortable with their self-diagnosis because we're frustrated with our doctors not listening.

The best way to go about gluten-free at first is all-natural things like rice, fruits, veggies, etc. Some say that you'll heal faster if you cut out dairy as well, may be hard for you

Also you'll need to replace your toaster, colander and any condiments that could be contaminated (peanut butter, jam,etc) so you don't get any traces that way.

I for one still use the same cosmetics, however I know some people use use gluten-free ones like Afterglow.

In any case, you've found a great support group! If you feel better off gluten you should stay that way!

I'm going to my family doctor today to have him take some blood to test for celiacs & food allergies. Are there specific tests I need to make sure he is running or will he know what he's doing? I'm just afraid b/c he's not a specialist he may not run exactly what I need to find the answers.

Hi there,

These are the tests you need for Celiac testing, you should print them out and take them:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

They all work in unison so you have to get them all to tell what's really going on.

Good luck

So anyone have any other recommendations of natural sleep aids? Benadryl works for me, but makes me drowsy the next day if I don't get more than the recommended 8 hours of rest.

This is what I'm also asking for in my thread "Occasional Insomnia", but nobody has replied yet...

you said that i must continue eating gluten for the testing....does that include biopsy testing???? i'm doubting they'll give me more blood tests anyway...but i want to know because i've already started going gluten-free.

Yes, that includes the biopsy too! It doesn't take long for some people to start healing once they go gluten-free sof if you plan on getting one, you definitely should be consuming as much of it as you can.

I'm sorry you're going through so much trouble. Luckily, most of us can relate Good luck

I use Tito's vodka, it's derived from corn and it is 6 times distilled- plus you can't beat it for the price... it was my go to even before Celiac, so I was VERY happy to find it was Gluten Free

...thanks, but I was hoping for something a little more conventional

Any other ideas?