leadmeastray88
-
Posts
266 -
Joined
-
Last visited
2 Followers
leadmeastray88's Achievements
-
-
I had a discussion with my priest about this, and he says that it is FULL COMMUNION to take only the wine and not the bread. We have several Celiacs in our parish so I don't feel self conscious bowing to the communion distributor before taking the wine. I felt awkward the first time though.
-
Hi there!
Your symptoms definitely give you reason to consider Celiac. You should ask your doctor for the bloodwork and biopsy and you must do so BEFORE starting the gluten free diet because it will wreck the validity of the results.
Also, the fact that your symptoms started post pregnancy is common, lots of people experience a 'trigger' (such as pregnancy, stress, surgery) and then their bodies start to react.
Don't you just want to say to your doctor, "I'm stressed because I feel terrible?!" Don't let your doctor disregard your symptoms because of 'stress', atleast not before exploring other possibilities.
I hope that helps! Good luck
-Kim
-
I want to use this lab for a diagnosis. DH is concerned that it is on the up and up. Can someone direct me to solid evidence that it is a reputable lab?
Thank you so much in advance!
Cinthia
Hi there,
There is no such thing. You won't find anything, other than people's testimonies, which are (if you visit the website) pretty positive. As of yet, Dr. Fine hasn't officially published anything related to his findings. We don't really know why. Some people think Enterolab is bogus. Some people don't.
I personally believe it is reputable and here's why: they found I have active dietary gluten sensitivity as well as two genes that predispose to gluten sensitivity. As soon as I cut gluten out, I can honestly say I feel 100% better. The results of this test have kept me from thinking 'its all in my head', as I was always told. That, to me, was worth every penny that I paid them.
All I can tell you is that Enterolab can't give you a Celiac diagnosis, or any diagnosis really. Only a doctor can do that, and they base it on bloodwork and/or biopsy. Most doctors don't support Enterolab because of their old ways and narrow views. Enterolab can test for many active dietary sensitivities in the stool, such as gluten, casein, soy and eggs. They can also run malabsorption scores and gene testing.
Many people here forego the testing and just start the diet and are very happy with their decision. However, there are also some that later on find their problems haven't resolved yet and can't get testing done because they've been off gluten for so long. If you haven't cut gluten out yet, you should definitely get the bloodwork and biopsy done by a gastro. No matter what the tests say, you should go on the diet strictly for at least 3 months and see what happens.
Good luck!
-Kim
-
Hey guys.
I've been gluten-free for almost 3 months, and everything has resolved for me, well almost everything. The fatigue is still there, not as bad but still there.
Also lately I have been noticing that I get dizzy spells and feel faint sometimes. Does anyone else get that?
Could it be blood sugar? I'm on B12 supplements and magnesium, as well as a multivitamin. All gluten free.
Any ideas on where to look?
Many thanks,
Kim
-
Hi there,
You've already received some great answers.
As for you gas issue, I only get it occasionally and don't take anything for it but I know my grandma takes Beano, and she swears by it.
Here's some info from the website:
What is Beano?
Beano is an all-natural solution for a completely natural problem. And almost any adult or teenager can use it.
Many people experience gas and discomfort after eating vegetables, grains, beans, legumes, and other wholesome or high-fiber foods. Even cereals, breads, nuts, and seeds can be problematic.
However, I found this in the FAQs:
Does Beano
-
Pass the optimism around!
For me, no more:
-nausea after eating
-constant stomach cramps
-constipation
-mouth sores
-migraines
Fatigue is still there, but is much better than it was. I've put myself on supplements to see if it helps.
-
Has anyone been diagnosed, either by a doctor, or themselves, just by doing a gluten free diet? and if so, is there a time frame, where you are suppose to stay gluten free, to help determine if in fact, it was the gluten causing the problems?
I was diagnosed on a combination of things, dietary response being one of them. My GP looked at my extremely positive dietary response and my elevated IgA levels found in Enterolab results. My cousin also has Celiac so that helped, even though I don't have the genes for it.
I truly think though that if you truly feel better gluten-free after months on the diet and ALL of your symptoms subside, then you have your answer. Otherwise, you may need to look elsewhere.
Good luck!
Kim
-
Yes, I know...he did use some outdated tests. BUT, I'm actually grateful for the ARA, as that is the one that showed up positive. If that had been excluded because it's considered obsolete, I may have been overlooked. What I've read (pg 143 of "Kids With Celiac" by Danna Korn being just one example) is that the ARA is not sensitive, but it is very specific. Only folks with DH or celiac disease come up positive. In fact, it is considered 100% predictive of celiac disease when positive. I've just found out that on both my tests, ARA was positive. In the first test, oddly enough, the positive was higher. It's odd because I'm eating a lot more gluten now then I did at the time of the first test. But that may be accounted for by something as simple as the possibility of a different lab tech running the tests. It was IFA, and I think I remember those being somewhat subjective.
Good news: I just had my first appointment with a GI yesterday. They drew blood for the tTG and Total IgA. Results will be back in 5 days. Also, I will be going in for a biopsy in a few days, and the GI doing the biopsy has many celiac disease patients in her practice.
Well, congrats to you! It sounds like you're on the right path! I hope your biopsy goes well and that all your symptoms will resole with the gluten-free diet.
Best wishes to you!
-Kim
-
Sending a little courage your way!
Prayers and thoughts are with you
-
What if they aren't looking for the combo of DQ genes that is indicative of gluten sensitivity, but only celiac specific genes?
I know Enterolab tests for both, not sure about the lab your doctor is talking about. Some doctors don't think 'gluten sensitivity' exists, some think it is the early stage of Celiac. Depends on the doctor. You should ask.
If you have gene analysis done, here are the ones Enterolab looks for:
Celiac: (HLA-DQB1*0201 or HLA-DQB1*0302)
Gluten Sensitivity:(any DQ1, DQ2 not by HLA-DQB1*0201, or DQ3 not by HLA-DQB1*0302)
Another thing to consider about Enterolab is they only test for the beta part of the gene, not the alpha. I'm no expert in genetics, but I've heard if you're positive DQ2 and DQ7 for the beta part, you can still be Celiac because these two can combine somehow to form a complete Celiac gene. I heard Kimball lab tests for both the alpha and beta parts.
Hope that helps!
-
You're doing the right thing!
Make sure you get a copy of the blood test results and post them here, and someone will help you interpret them.
It's crazy how many times doctors order you a "Celiac panel" and either don't order the right tests at all or missed some.
Like another poster said, if your blood test results are negative you could definitely give Enterolab a shot - www.enterolab.com. You don't have to be eating gluten to do the tests. But keep in mind that they can NOT diagnose Celiac disease. They can detect active dietary gluten sensitivity in your stool, aka IgA and tTG antibodies. This is not a clinical diagnosis, but it is definitely useful info. You can also order the gene test to see if you have appropraite genes - which might help your mom too!
Either way, after all testing is done you should try a strict gluten free diet. It sounds to me like you belong here and I wish you all the best of luck!
Kim -
I'm not very good at test results, but something else you might want to consider is that they didn't do the complete Celiac panel. Here's all the tests they should have run:
EMA (Immunoglobulin A anti-endomysium antibodies)
AGA (IgA anti-gliadin antibodies)
AGG (IgG anti-gliadin antibodies)
tTGA (IgA anti-tissue transglutaminase)
Looks like they only did the AGA and tTGA for you.
The purpose of the other tests is to rule out the fact that you may be IgA deficient (which means you can't produce enough IgA antibodies) therefore skewing the results.
Before going gluten free, you may want to ask for these tests first just to be sure.
Then, I would try a strict gluten free diet for a few months and see what happens. Some people find that cutting out dairy and/or soy for the first bit is helpful also.
Good luck and welcome!
Kim
-
Like another person has already said, Enterolab cannot diagnose Celiac. Only a doctor can do that. It can only detect active dietary gluten sensitivity. I found that the gene testing was quite interesting as well. It' s a good bit of information to know, especially if/when you have children.
If you happen to have the Celiac genes, along with your positive dietary response, your doc may give you a diagnosis based on that. Or maybe he won't.
You obviously feel better gluten free. You know it is not good for you. What will a clinical diagnosis really get you? Other than really really sick again?
I am very confident with my decision to use Enterolab. It only confirmed what I knew already - that gluten is a big no-no for me. My results, along with my positive dietary response, helped me get a Celiac diagnosis. But that is all based on the doctor. Most doctors wand the 'gold standard' diagnosis, meaning positive blood and biopsy. But we all know that is bogus anyway.
Considering how long you've been gluten free, even if you eat it for a couple months straight, your results still may not be accurate.
Whatever you choose, I wish you luck! I know it's hard, but you have many people here to support you!
Best wishes,
Kim
-
Positive results= Positive results
A 'classic' Celiac diagnosis is based on villi damage. If you have it, even if it is spotty, you have Celiac disease. No two ways around it.
Like Rachel said, gene testing is useful when other testing is negative and there is still doubt.
You shouldn't have ANY doubt when your bloodwork AND biopsy came out positive.
Welcome to the club
-
Brownie in a cup
2 T. white rice flour
2 T. potato starch
1/8 tsp. xanthan gum
2 T. baking cocoa
4 T. white sugar
1 1/2 T. veg. oil
2 T. water
Stir together dry ingredients, add wet and stir. Microwave 1 minute (to 1 1/2) , don't over cook it. It doesn't get big like the cake version.
It is much like brownies w/o the eggy texture and its egg and dairy free too. Have fun.
Tapioca flour is for chewy texture
Potato starch is for lightness
Less protein flour is for cakes
I am learning
OMG... tried this 2 days ago, and now I'm making it every day!!
My little sister even got into it - now she makes her own (gluten) version.
Hoollllly....dangerous! lol!
-
I went to see my GP today, armed with my Enterolab results, expecting everything but a receptive response.
I told her I didn't go back to the GI, because he prescribed me an IBS med and refused to scope me. I told her I wasn't going to settle for an IBS dx.
I told her about Enterolab and showed her the results. I explained how I started the gluten-free diet 2 months ago and how all of my symptoms had disappeared. She was overwhelmed with joy. She said herself that she 'knows the blood testing is terrible' and how she knew all along it was Celiac. She put it on my chart and said that I had made her day, knowing that I was doing and feeling so much better. She was very interested to hear about Enterolab and how I heard about it. I was shell shocked. I was not expecting this at all! She was happy that we had finally figured this out and without having to do a biopsy.
Just so everyone knows - there are doctors out there who are willing to listen and willing to learn about new testing methods. If only there were more of them to go around!
<3
Kim
-
Yup I definitely think its the tags
Thanks so much!!
-
I tried to update my signature and it says its too long. I've seen people with way longer ones!
Has there been a change in how long we can have it?
Thanks!
-
This is my genetic analysis:
HLA-DQB1 Molecular analysis, Allele 1 0202
HLA-DQB1 Molecular analysis, Allele 2 0301
Serologic equivalent: HLA-DQ 2,3 (Subtype 2,7)
So I know the 0201 is the celiac gene, but the 0202 with the right DQ7 gene can create a celiac gene, am I wrong?
Does anyone know of any labs that test for the alpha chain too?
-
In my opinion, you definitely should.
You are showing some 'classic' sympoms of Celiac. But, as Momma Goose said, everyone reacts differently and symptoms are all over the radar.
Definitely get the blood testing done, and you have to be eating gluten for them to be accurate.
No matter what the tests show, a good strict gluten free diet is the ultimate test.
If you need any help there are many people here who would be glad to!
Welcome!
Kim
-
Most definitely!
That was the first thing I noticed the first time I was glutened after being gluten free for 3 weeks - mouth sores. That's how I know now when I've eaten something I shouldn't. And it's usually followed by heartburn/stomach pain.
Just so you know -
Blood tests are terribly inaccurate, and they won't detect if you're simply gluten sensitive instead of Celiac. If your blood test comes back normal, I highly recommend trying Enterolab: www.enterolab.com. It's a stool test for gluten sensitivity, and you can also get the DNA testing. The best part is - you don't have to be eating gluten when doing the tests!
Good luck,
Kim
-
thank you all for the advice, i have decided to change gastroenterologists, and see try and see a celiac specialist here in LA, at UCLA medical center.
although i do have a scheduled colonoscopy with my current GI doc, on monday of next week, i think i will still go through with that....because of the long wait (a little over a month) to see the celiac doctor.
does anyone not advise me to continue with the colonoscopy?
still really confused, but your advice is helping put me on the right track. it is hard to make some of these difficult decisions, and being still somewhat young. (25)
thanks again everyone.
-TIM
Just to be clear - are you getting a colonoscopy to check for things other than Celiac? Because they can't diagnose Celiac through a colonoscopy, only an endoscopy.
You have already been diagnosed Celiac, so there's no second guessing that. If you're concerned that there's something else going on (besides other food intolerances, like veggienft said) then I would go through with it, just to rule out other things. In the meantime, I agree with veggienft that you should explore other intolerances.
-
As everyone here has already said...
Consider yourself lucky! It takes an average of 11 years for people to get a proper diagnosis of Celiac! You don't have to undergo an invasive procedure to get a diagnosis, when positive bloodwork is really all that is needed.
It's pretty clear to me that that is what it is - you have a first degree relative with it (your son) as well as a family history and positive bloodwork. If you really need affirmation, you could always do genetic testing, but I don't see why that would be necessary seeing as your son has it. In any case, the diet is truly the best test.
Welcome!
-
These things are amazing, you won't want to wait for them to cool before digging in!
1/2 cup butter (or substitute, your preference)
1/2 cup natural crunchy peanut butter
1 cup honey
1 cup gluten free vanilla protein powder
3 cups quinoa flakes
1/2 cup unsweetened coconut
1/2 cup of nuts/seeds (I took a 1/2 cup measure and filled it with sunflower, sesame and flax seeds)
1/2 cup raisins/dried cranberries (optional)
1- Combine butter, peanut butter and honey in a saucepan and melt together
2- Combine other ingredients in a large mixing bowl
3- Add the melted butters/honey to the dry ingredients and mix well
4- Press into an ungreased 9x9 inch pan (or 9x11 if you want a shallower bar)
5- Refrigerate until cooled through and cut into squares
I wrapped mine individually with plastic wrap and stick them in the freezer, and grab them on the go!
Hope you enjoy them!
<3 Kim
Blood Test Results...i'm Confused!
in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Posted
Hi mom4life,
Being gluten free for even a few days can make your biopsy turn out to be a false negative. The villi in many people's intestines can heal quickly so I wouldn't take any chances. The biopsy is the 'gold standard' for a Celiac diagnosis so I would urge you to keep eating gluten until the biopsy - trust me, it'll be worth it! That way, you'll never have a doubt in your mind years later that you're doing the right thing.
Hang in there! You're on the right track.
Good luck!
-Kim