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Marc49

Member Since 21 Jan 2011
Offline Last Active Feb 16 2013 02:03 PM
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Posts I've Made

In Topic: Which Testing To Get?

16 February 2013 - 02:01 PM

I've gotten myself confused about testing...is ttg what I want? I am skeptical about biopsy, because its so dependent on biopsy location, and the reading of the biopsy itself.

I'm hoping to have the genetic component tested as well, and that's straight in my head, but the immune stuff I'm confused about. Help, please?

Thanks,

Laurel


Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA

This is a list direct from a Mod here named Mushroom.
I did a C&P from my thread so as to save it to a Word document.

I have previously been tested positive on the genetic screening, but then had an EGD that was totally negative.
Went gluten-free for a year and a half, with no changes basically.

I will be getting these same blood tests done for the first time next month hopefully, and be able to put this question to rest for myself once and for all.

Best wishes, and keep eating plenty of gluten until the tests.

In Topic: Negative Blood Test But My Fantastic Doctor Has Referred For Biopsy Due To Sy...

15 February 2013 - 12:21 PM

Yeah, I'm pretty much loading on gluten - including it in as many meals as I can.

I feel terrible, but then my symptoms have been pretty constant so it doesn't make much difference at the moment - I don't really know any different.

I'm not worried at all aout the endo. I'm gonna opt for conscious sedation as I had that when having some teeth removed and I found it helped loads. I'm so phobic of dentistry I shake too much to be able to receive a filling safely without being sedated.

I'm not really scared of the endo and I think I could manage it without sedation, but I'm gonna go for it any way because it certainly won't make things worse…

An EGD is nothing in terms of testing,.....totally painless. I have had two of them BTW.
You are doing the right thing by eating as much 'gluten' as possible. Do NOT cut back until you get the results.

I think you are correct to go gluten-free regardless of the biopsy results, but you MAY turn out like I did.
I went gluten-free for a year and a half after positive gene tests, and then a totally negative EGD.

I never felt any better, and I actually gained weight back after starting to eat normal again. I am full of gluten at this point, and will be having all the blood tests done for the first time soon.

A lot of people DO have IBS, and GERD.
I believe that is what my issue is.
You must do what you feel is correct for yourself. Many here will say you need to be gluten-free regardless of any testing, or whether your symptoms improve or not after you try the diet for an extended time.

Your choice as to whether you buy into this mindset or not.
Some folks have almost turned this into a religion, and they get VERY offended when someone says something they don't wish to hear.

Check into the Paleo style diet.
This is basically what I did, and regardless of gluten, it's fine to follow IMO.
I wish you the best! :)

In Topic: Not New Here,......blood Testing Question.

14 February 2013 - 01:33 PM

The associated Celiac genes are present in 30 percent of the world population while Celiac disease itself is present in about 1 so perhaps that is why your GI called the other guy a "quack".

According to the University of Chicago Celiac disease center blood tests will provide with false negatives 1-2 percent of the time and false positives 2-3. A lot of doctors are against the blood tests because of the higher false positive rate, which can go higher than 20 percent in certain population samples (I.e- Type 1 diabetes patients). http://www.curecelia...-celiac-disease

Given the stress and anxiety that comes with false positives many doctors will choose against the blood tests to avoid scaring the patient and having them go through an unnecessary procedure. Infections that are not even part of the intestinal system have been shown to give transient rise to the Tissue transglutaminase ab's. If you had a small infection recently that may have not been large enough to notice and your body just fought it off you run the risks of these elevations.

Now to say blood tests are completely useless is very wrong. Proper interpretation of the blood tests is what is crucial, if the numbers were very low positive and you had a recent infection it would be best to wait a couple of months and retest. If the numbers were very high positive (5-10 times the range) and you have screaming Celiac symptoms then some doctors will go ahead and diagnose you upon symptom resolution and antibody decline after going gluten free.

Also keep in mind that Celiac disease is not always so blatant. My G.I went on a rant on how ignorant doctors are on the disease and how he has had many patients with little symptoms and some nutritional deficiencies upon diagnosis of completely flattened villi. If I were you I would get the tests that mushroom mentioned and be sure to bring us back results for some interpretation. Good luck! Hope you feel better soon!

That you very much for that added information. :)
I tested low on B-12 one time, but I attribute that to my long term use of Nexium for GERD. I was on 40mg a day for roughly 5 years. I then cut my dosage to the 20mg pill against my GI docs wishes, and have done fine.

Funny thing is my B-12 went up after going back to a normal diet, but I also realize it may have something to do with the lower PPI dose,....who knows to be honest.

I have also gained weight since not being gluten-free any longer. I thought a sign of celiac, or gluten intolerance was unexplained weight loss?
Keep in mind I am not eating a 'non-healthy' diet by any means.

Have already faxed that list of blood tests to my doc, and they said I can pick up the order whenever I want to. I will be very interested to see the results. Personally, I consider 2 to 3% false positives to be quite low.

Thanks again for any and all info posted. I just want to know for certain,......as much is possible, that I am not doing damage to myself, and I simply have IBS.

In Topic: Not New Here,......blood Testing Question.

13 February 2013 - 11:15 AM

Thanks a lot Mushroom for the reply.
All I can say is I remember the GI doc saying he took quite a number of samples for biopsy. I would have to pull my paperwork to be able to comment further than I have.

I am going to get the blood tests done next month, and it will be interesting to see the outcome. I hope that Quest Diagnostics handles these, as it is where I am supposed to get blood work done under my insurance policy.

I have had a number of blood tests done that are meant to show inflammation in the body, and they have all been negative. I remember CRP, and ANA for two,......very low.
Doc actually tested my uric acid level as well thinking possibly I was having a small amount of gout in my joints. Another negative, as I was barely above the low normal point as in 4.5 IIRC.

I see all the things you have given up, and can't imagine how you manage to eat to be honest.
Myself,......about the only thing I don't eat is soy. I love tomatoes, and sauces made from the same. Can't imagine how this could be an issue, as I have eaten them my entire life.

When I was a young child, I was supposedly allergic to milk for a period of time.
I started back on it about 12 years of age, and it seemed the problem had disappeared. I rarely drink milk, but I DO love cheese in moderation.

How did you find out you had issues with all of these food items?
Are there tests for these as well, or did you just keep eliminating things from your diet to find out on your own?

To finish up, after some thought,......I was gluten-free for very close to a year and a half.
It was late summer 2012 that I started slowly adding gluten back into my diet, and within a month I was back to eating exactly like I did before. I have been eating gluten everyday for 6 months or so now, and I assume that is plenty of time for the blood work.

Hopefully those tests will confirm/deny something for me.
I just don't know whether I have a gluten/food allergy issue, or I really have IBS. My arthritis could be easily explained since I have been a contractor for 30 years, and my body has been through a lot of wear and tear.
I don't get the symptoms that a lot of you folks seem to have, such as skin issues, itching, brain fog, etc.
Mine is mainly a rumbling gut with constantly changing bowel habits that did not go away while I was gluten-free.

Sorry for my rambling novel, but I appreciate your time very much!
Best to you. :)

In Topic: Not New Here,......blood Testing Question.

12 February 2013 - 11:31 AM

Mushroom,.....hate to bug you again, but did you see my last post?
Would a week at most gluten-free fully, or partially impact my EGD biopsy results?

Thanks again.