Enterolab Results Are Finally In -- It's Finally Hitting Me

[Aerin328]

I had been sick for 4 months. I had been "diagnosed" on 7/6 based on elevated blood antigliadin IgG level only. Today I received my (more conclusive) results from Enterolab, and they are POSITIVE! (See signature below for results!)

I've been adjusting to the idea of being celiac since 7/6 but now it's actually hitting me for the first time with these tests being positive. It's overwhelming... not to mention I've discovered I'm now casein intolerant as well. I feel trapped as entire food groups are being swathed out , feels like I may never get to the bottom of what I actually can and can't eat. I feel like I've been on a witch hunt against my foods for ages (even though it's only been 7 weeks), like it will never end...

I guess this is the first day of the rest of my life, as they say, and it should get better. I'm only 26, so I have time ahead of me, but right now it's just SO overwhelming.

Any words of advice from the wise celiacs of the world out there?

[Guest nini]

wise words of advice? how about, focus on what you CAN have, not on what you can't!

[CarlaB]

Welcome! I'm casein intolerant, too. I was feeling so much better gluten-free that I thought that I could avoid giving up dairy ... but then I realized that every time I thought I was glutened, I had eaten dairy! It seemed to be the missing link and I gave it up almost two months ago ... still waiting to feel good.

Start with the fact that you can have meat, chicken, eggs, fish, nuts, fruit, vegetables, rice and potatoes. Use olive oil and coconut oil to replace butter/margerine. If you really want a butter flavor on something, you can use Ghee clarified butter, which is casein free. I've not had a problem with it, but since it's mechanically separated, I think I should only use it once a week or so.

I like Tinkyada pasta.

You can find replacements for many of the other products you like, but this gives you a place to start.

[jayhawkmom]

Ya know what? The same thing happened to me! I was dx (gluten intolerant) by elevated IgG only. My test was also done on 7/6 - which just happened to be my daughter's 5th birthday. The reference range for the lab I went through was under 11. Mine was 69.

I'm having an endoscopy tomorrow.

My GI informed me that after midnight tonite I will be gluten-free, strictly.... for the rest of my life. He said the blood test results warrent it, with or without the endoscopy. But, I'm having it to rule out anything else, just to be on the safe side.

SO, we're in this boat together.

I think I've been living haphazzardly, and in a state of "partial" denial with regards to myself. Even though I've been diligent and vigelant with my children.

Best wishes to you. I look forward to reading the responses you get!!!

[wolfie]

I agree to focus on what you can have, not what you can't.

At least you have some answers now and you can get on with the diet and your life.

I am debating whether or not to go dairy/casein free. I haven't done Enterolab, but know for a fact that I am Lactose intolerant and possibly casein intolerant.

Good luck to you!

[ArtGirl]

Good for you for getting serious about your diet now while you are young enough that you'll be able to live a healthy productive life without having to focus on the bad things that this disease does to a body whose gone decades without a diagnosis.

I feel like I've been on a witch hunt against my foods for ages (even though it's only been 7 weeks), like it will never end...

I have felt the very same thing and am often "sick and tired" of dwelling on my health and my diet. However, when I discovered this board it speeded up my learning curve and it all has gotten much easier. Many here have gone before us in this journey and already discovered what's safe to eat and have shared their experiences. I have found many good recipes in the cooking forum here, too. And I always check here first before eating something new. Saves being my own guinea pig.

[par18]

I had been sick for 4 months. I had been "diagnosed" on 7/6 based on elevated blood antigliadin IgG level only. Today I received my (more conclusive) results from Enterolab, and they are POSITIVE! (See signature below for results!)

I've been adjusting to the idea of being celiac since 7/6 but now it's actually hitting me for the first time with these tests being positive. It's overwhelming... not to mention I've discovered I'm now casein intolerant as well. I feel trapped as entire food groups are being swathed out , feels like I may never get to the bottom of what I actually can and can't eat. I feel like I've been on a witch hunt against my foods for ages (even though it's only been 7 weeks), like it will never end...

I guess this is the first day of the rest of my life, as they say, and it should get better. I'm only 26, so I have time ahead of me, but right now it's just SO overwhelming.

Any words of advice from the wise celiacs of the world out there?

In my case I have learned two things. One is that food is only "fuel". The other is eat to live don't live to eat.

Tom

[Aerin328]

Thank you all for the replies. As always, it is so encouraging to hear from other people out there who (as you put it Valda ) have "gone before us in this journey." (Valda, I saw in your signature sensitivity to EMF's? omgosh...)

Ya know what? The same thing happened to me! I was dx (gluten intolerant) by elevated IgG only. My test was also done on 7/6 - which just happened to be my daughter's 5th birthday. The reference range for the lab I went through was under 11. Mine was 69.

I'm having an endoscopy tomorrow.

...

SO, we're in this boat together.

Jayhawkmom, good luck with your endoscopy! I went to an upper GI doctor two weeks ago who said, "eat gluten for a couple months and let's do an endoscopy." I politely said, "Um, no, that's crazy but thx" and got Enterolab instead. But anyway at least after tomorrow you will know it has been done. If you need further confirmation, check out www.enterolab.com !

Carla, I hope you start feeling better soon. You were the one who encouraged me to go to Enterolab, so I wanted to say thank you now for the encouragement. And as for how you feel, remember, "this too shall pass." (Enterolab results commented gluten-inspired autoimmune reactions can continue for up to 2 years after eating gluten off and on, so just be patient! )

Nisla / Tom, thank you for the advice - I do plan to focus on what I can eat more than what I cannot. It's just tough to focus on what you can eat when you don't know what you can eat (yet) and the theories keep changing. I will continue to experiment carefully. Once it's all nailed down, I'm sure this will all be easier. Right now it's just tough.

Ursula said to me last month "you are just beginning." Didn't want to "digest" the comment fully then; but now I do understand, she was right. I just hope it gets easier as I go.

[jayhawkmom]

If they would have wanted to me to wait...and eat it, I would NEVER have consented to it. I saw the GI on Tuesday.... and had an appointment for the endoscopy for tomorrow. Someone cancelled, and they moved me RIGHT up instead of rescheduling someone else. =)

I got lucky in that respect!!!

[CarlaB]

Carla, I hope you start feeling better soon. You were the one who encouraged me to go to Enterolab, so I wanted to say thank you now for the encouragement. And as for how you feel, remember, "this too shall pass." (Enterolab results commented gluten-inspired autoimmune reactions can continue for up to 2 years after eating gluten off and on, so just be patient! )

Thank you. I looked up my old email with the Enterolab info and didn't see anything like the comment you just made. Did you see it on the website, or was it on your email with the results? Would you mind typing in the comment if it was in the email ... I'm interested in reading about that!

I have heard the two years, just not from Enterolab. I've also heard it's worse when you're over 30, and I'm over 40! I do better when I have good days mixed in with the bad ... it's just that I've been on a stretch of bad days for a couple months now.

[FaithInScienceToo]

Reading your post reminds me of when I was first diagnosed...it's a bit of a roller-coaster ahead for you...so, just hold on, and you'll soon enough be coasting into MUCH better health -

I, too, am casein-intolerant...I waited to go CF, though, as I knew that gluten-free would be hard-enough...

About what you can eat...there's loads of stuff...you'll find it all, and become very creative, in time, especially when you're hungry...I have become a VERY GOOD cook - perhaps you will, too?

I see you have a guy's pic...if you are a male, you'll attract women by learning to cook :-)

[CarlaB]

I see you have a guy's pic...if you are a male, you'll attract women by learning to cook :-)

If I remember correctly, he's taken already!

[penguin]

If I remember correctly, he's taken already!

To another celaic, no less!

[FaithInScienceToo]

WOW! Good for them! No problem with empathy for each other's health issues... ;-)

[Aerin328]

Thank you. I looked up my old email with the Enterolab info and didn't see anything like the comment you just made. Did you see it on the website, or was it on your email with the results? Would you mind typing in the comment if it was in the email ... I'm interested in reading about that!

Carla, Their FAQ section says:

"Follow up of an abnormal antigliadin antibody also can be done at 1-2 year intervals as a guide to dietary compliance, but remember that in the first year or two, the levels rarely go to normal, and sometimes, because of enhanced immune function, may rise for a time before ultimately trending down."

I see you have a guy's pic...if you are a male, you'll attract women by learning to cook :-)

FaithInScience, I love the avatar pic!

Yes, I am blessed enough to actually be with another celiac. Actually she (her name on this forum is "esthesio_vivi" member 9933) was sick before I was, then when I became sick she suggested wheat intolerance... but even then she believed her problem was candidiasis, not celiac disease. After I was tested positive via bloodwork for celiac I encouraged her to, and sure enough, her bloodwork was also positive. (Now I'm just trying to convince her to go to Enterolab. )

As for the cooking comment... before this I was daunted at even making proper mac'n'cheese - cooking was absolutely foreign to me. ("Is this how you turn on the stove again?" lol) Necessity has warranted that I learn quickly however, and after almost 2 months now I am finally starting to get comfortable with it. lol (Though I still repeatedly ask esthesio_vivi, "Is this too done? How about this? Do these fish look too crumbly?" etc.)

On a side note, last night I had a nightmare that I ate a huge tortilla at Taco Bell and half of an italian hoagie . My subconscious continues to try to catch up w/ me... day by day this is more real!

I feel better than I did, but I definitely still have bad days. Probably 50% of the days are brian fog/ fatigued etc. ... but much better than 100%. I prided myself previously at being a patient person... but Celiac teaches a new depth of patience that I have not yet fully grasped. Thank God for the support of others then as I continually learn the patience to make it through the next months/ year+ to a calmer immune system and recovered digestive health.

Thanks to all who have responded, as always I really appreciate the support.

[CarlaB]

Thank you for posting that.

I thought I had candidiasis, too. My grandfather was diagnosed with it years ago (I think he had gluten-intolerance), so it was the first thing that came to my mind from my symptoms since the symptoms are so similarl to celiac. Then I discovered the problem with wheat.

I have those same nightmares. What really gets me, why can't I just dream I ate a Big Mac and enjoyed it? Why do those dreams have to be so stressful!!

[esthesio-vivi]

If I remember correctly, he's taken already!

That's right! What a blessing to be with someone that can understand in the truest sense.

Yes! Candidiasis has such similar symptoms! I still believe that had it at some point, but I blamed it for all of my health problems for the past three years. I thought I was just cursed with an absurd case. I would get better on the yeast-free diet because I was cutting out everything that had gluten in it as well. The moment I relaxed a little with my diet I would end up getting glutened, and I would just think it was the candida getting out of hand again. Things just weren't adding up.

I've read the people with Celiac's desease are particularily prone to Candida overgrowth. I hear about people struggling with Candidiasis for dozens of years, I can only wonder if Celiac isn't at least the root.

I can't believe that I put myself through that absurdly strict diet for so long, just to find this out. Believe me, discovering I am a celiac is the greatest blessing I could've imagined. Going without gluten is nothing in comparison to the anti-candida diet. Now with this knowledge I can be free!

[CarlaB]

That is almost the same thing that happened to me! I had been on a 21 day round of antibiotics, then figured my joint pain and other symptoms were from candida. I ate strictly low-carb ... then I'd "test" my theory with a brownie! The joint pain would come back, "proving" carbs were the problem, when it was the wheat all along. It wasn't too long after that I realized it was wheat, but didn't learn it was celiac until three years later.

BTW, you two must make a very cute couple ... haven't seen a pic of you together, but judging by your separate pics, very good looking couple!

My hubby is not gluten intolerant, but has been very supportive and tells me daily that I'm doing better, I'm beautiful (even if I feel like garbage and am laying around), and that he's lucky to be married to me. So, I have great support from him. He doesn't mind at all that our lifestyle had to change ... he said this happened to "us" not "me". We've been married almost 22 years.

[Aerin328]

Carla,

That's great to hear you have such a supportive husband. You deserve it!! (As I said before, you "convinced" me to get Enterolab testing)

Thanks for the compliment... When Celiac hits it's hard to feel "good" about anything sometimes, especially about appearance which is the least important of all things! But anyway as you mentioned it I think there's a pic of us on Esthesio's portfolio site as linked in her signature (2nd page maybe?)

So Carla, do you want to jump on the wagon and encourage Esthesio to get tested at Enterolab as well? Her family and I are encouraging her to... (I find myself politely pointing out the sources of casein in all her food, wondering if just maybe she also has a problem w/ it as I do?)

So Carla, how are you dealing with the Soy thing?

And again thank you to all who have responded (or will respond) to this post, it's great to hear words of encouragement from so many who have gone before and experienced all of this. It is still new in so many ways, and it's great to have a group to turn to (as most family and friends can be completely not understanding). Thanks again

[CarlaB]

Christian, thank you, I don't know whether or not I deserve such a great hubby, but he's certainly a gift. Poor guy is very overloaded right now taking care of me and the kids.

Enterolab is good because they can so easily do testing for various intolerances. I have cut out all the primary allergens to see if it helps me to get better. Once I feel good, I'll cycle them back in one at a time to see if they are a problem or not. This is where I am with soy right now, not eating it till I feel good. This seems like the hard way when I could have just had the test with Enterolab, but I only had the gluten and casein tests. So, on the one hand, Esthesio already knows she has to stay away from gluten, so the gluten test itself may not be necessary unless she feels that she will have trouble with the diet without the test. On the other hand, the tests can help find other intolerances that are more difficult to find otherwise.

I can say that I never would have suspected casein without Enterolab. In fact, I did not eliminate it right away because I couldn't believe it. Then I realized that I was getting sick every time I had dairy. I guess when I was sick from the gluten, I couldn't see what the dairy was doing to me, but when I became gluten-free, it was more obvious.

Now, I'll have to go look for that picture!

Edit -- I was right, cute couple!