Please Help Me Get Through This Weekend

[Lynayah]

Hi,

Please help me get through the weekend?

I go in for my endoscopy/biopsy on Monday. In the meantime, I am told my Deamidated Gliadin is high (86) but my antibody inflamation is low (less than 9). I spoke with the office to get the results, not the Doc., so I'm unsure how to interpret this.

Might anyone offer some thoughts?

In the meantime, I am told that all the Immodium I've been taking to enable me to eat gluten for the last six weeks (I've had to take a TON each day to keep from having diarrhea as well as incontinence) has me so seriously clogged that I need to do something. SO, now I'm on a laxative indefinitely -- Miralax starting tonight -- and no more Immodium allowed.

This is going to be a VERY interesting weekend.

<laughing> Hubby has been lovingly teasing me with, "Gee if they wanted to know if you were full of it, all they needed to do was ask me!"

PLUS, I still have to eat gluten!!! They don't want me off of the stuff until I've been tested on Monday AND they've confirmed they do not want to do a re-test. And I have to work . . . while taking the laxative . . . and eating gluten at the same time. Oh good grief.

Looks like I'm in for a "crappy" time until this whole thing is over. Augh!

Okay, more: I was diagnosed with a dangerously low Vit. D count last year -- I've been taking mega doses of D since, and now I'm testing high which gives me hope that I'm absorbing nutrients and maybe this is just gluten intolorance instead of Celiac, but who knows.

I am so confused about everything.

I love this forum and am so grateful for the support here. Thank you for your help!

[happygirl]

Just wanted to say hang in there! Also, while you are there, ask for a copy of your bloodwork. And, before your procedure, make sure you talk to the doctor to ensure he takes multiple biopsies from multiple locations in order to increase the accuracy of the procedure. ("at least 4 to 6 biopsy pieces need to be taken" - Open Original Shared Link

The end is in sight - you can go gluten free very soon!

[Lynayah]

Just wanted to say hang in there! Also, while you are there, ask for a copy of your bloodwork. And, before your procedure, make sure you talk to the doctor to ensure he takes multiple biopsies from multiple locations in order to increase the accuracy of the procedure. ("at least 4 to 6 biopsy pieces need to be taken" - Open Original Shared Link

The end is in site - you can go gluten free very soon!

Luv ya, Happygirl! Thanks for the support.

[lizard00]

You only have two more days until you can happily toss gluten from your life. You can do it!!!

I have to say though.... if eating gluten gave me diarrhea, there's no way I would take a laxative on top of it. That just sounds like multiple changes of clothes waiting to happen...

[jerseyangel]

Yep--it won't be long now! Just think about how good you're going to start feeling once the test is over with and you can ditch the gluten once and for all.

The laxative may prove to be overkill though--so be careful. Best of luck on Monday--take care.

[Lynayah]

You only have two more days until you can happily toss gluten from your life. You can do it!!!

I have to say though.... if eating gluten gave me diarrhea, there's no way I would take a laxative on top of it. That just sounds like multiple changes of clothes waiting to happen...

As I found out this morning, it is, it is, it is!

That's why I was so tanked up on Immodium! I couldn't do the gluten challenge with out it, well, unless I wanted to carry a wardrobe with me everywhere!

Thanks for the words of support.

[Lynayah]

Yep--it won't be long now! Just think about how good you're going to start feeling once the test is over with and you can ditch the gluten once and for all.

The laxative may prove to be overkill though--so be careful. Best of luck on Monday--take care.

Thank you, Jerseyangel!

Here's a note for those reading this thread who may have to go through the same thing:

Amazingly, the laxative has been fine -- no problems, and not really any changes (and they say I have a lot to clean out).

Without the Immodium, it is knowing I need a bathroom close by if I eat gluten, but I haven't had any other major "runs," as it were! It feels like old times.

This stuff seems pretty mild. It says on the label that it can take a few days to work, that someone typically sees results on one or two days, so we'll see.

[Lynayah]

Thank you to everyone here -- tests are done and I'll have the results next week. I made it through the weekend with appreciation for all of you.

[Lynayah]

I have my results and am writing to thank everyone again. My doctor ordered more tests, including a gene test.

My Gliadin IgG is very high and I definitely have gluten sensitivity, or intolorance -- whichever you wish to call it.

My biopsy and gene test came back okay, so it is not Celiac.

Because I am highly sensitive to gluten (now that I'm back to eating gluten-free, I see how just a crumb makes me very sick), I still plan on eating gluten-free, and I definitely plan on being a strong advocate for Celiac research, etc.

I am feeling better day by day. The doctor says it may take 6 months or so before I feel fully healed, even though I do not have Celiac.

Thank you all so much for being there and for caring! See you around the boards!

[nora-n]

What are your gene results?

There are many people here who are celiac or undiagnosed , and who do not have the DQ2 or DQ8 genes.

Some are mistyped.

One DQ8 was mistyped as negative, and then confronted the lab with teh fact that her son was DQ8 and celiac and that she was diagnosed years ago with viopsy and a highly positive blood tests, and they sent hte sample to another lab and it was positive for DQ8. the tests for DQ8 are not that sensitive.

The biopsy can just sample the wrong area, and miss celiac.

Have you by any chance taken any steroids recently? Those are famous for causing wrong negative biopsies.

Sometimes when your read the actual biopsy result, it says you are celiac but they did not sspell it out and the doctor thiks that means it is negaive. Blunted villi is celiac, but the doctor miss that because the report did not spell out celiac. Increased Intraepitelial lymphocytes is celiac, but the doctor may miss that too. Did you see the actual report?

If you are DQ1, you can be extremely sensitive to gluten, and more sensitive than the DQ2's.

nora

[Lynayah]

What are your gene results?

There are many people here who are celiac or undiagnosed , and who do not have the DQ2 or DQ8 genes.

Some are mistyped.

One DQ8 was mistyped as negative, and then confronted the lab with teh fact that her son was DQ8 and celiac and that she was diagnosed years ago with viopsy and a highly positive blood tests, and they sent hte sample to another lab and it was positive for DQ8. the tests for DQ8 are not that sensitive.

The biopsy can just sample the wrong area, and miss celiac.

Have you by any chance taken any steroids recently? Those are famous for causing wrong negative biopsies.

Sometimes when your read the actual biopsy result, it says you are celiac but they did not spell it out and the doctor thiks that means it is negaive. Blunted villi is celiac, but the doctor miss that because the report did not spell out celiac. Increased Intraepitelial lymphocytes is celiac, but the doctor may miss that too. Did you see the actual report?

If you are DQ1, you can be extremely sensitive to gluten, and more sensitive than the DQ2's.

nora

Nora,

That is very interesting.

I haven't yet read the reports directly . . . but I will. I spoke with a nurse who gave me the results - she said my antibodies are high but the gene test (as well as the biopsy) came back negative.

I am going to the Celiac Center at the University of Chicago -- many, if not most, of the blood tests are sent to Mayo -- I would pray that they are reading them correctly since they specialize in Celiac, but it is DEFINITELY worth checking. Thank you!

No steriods so that's not a problem here, thank goodness . . . although I felt as though I were on the darn things when I had to do the gluten challenge -- increased hunger, bloating, weight gain. Augh. <Laughing>

It is frightening how easily a misdiagnosis can occur -- I hope many others read your post so they, too, take extra precaution to make sure they're being given the right information.

Case in point: A different doctor at a different clinic blood tested for Celiac last year, but -- as best I understand it -- the doctor did not properly check my antibodies and overlooked the gluten sensitivity. I was HORRIBLY sensitive to gluten, but because the initial Celiac blood work came back negative, he told me I was fine. It was quite a struggle until now because I kept becoming increasingly symptomatic.

[nora-n]

Hi, mistyping and running the wrong tests are not so uncommon.

By teh way, the person with the mistyping on DQ8 also ordered a gene test from Enterolab, since they tell you what gene you have, not just positive or negative. Enterolab found the DQ8 too.

They send their gene tests to the American red Cross.

But Enterolab does not test for the alpha chain, and misses all the 05* alpha chains. DQ7 often has a 05* alpha chain.

That is half a DQ2 celiac gene, and there is an increased risk for celiac.

Kimball tests for the alpha chain, but does not tell you what gene you have other than DQ2 or DQ8.

Dr. Hadjivassiliou found that 20% of his gluten ataxia patients were DQ1.

So, gene tests also have their limit.

If you do a search here, a person with the handle half full had access to the full versions of scientific papers, and posted all the other genes found in celiacs from a paper where they tested over 1000 european celiacs. There wer many with half genes, I think 6%, and 1-2% with other genes than the celiac genes.

Maybe you find it when checking my replies, as I replied in that thread.

They only contribute with about 40% of the risk for celiac.

nora

[Lynayah]

Hi, mistyping and running the wrong tests are not so uncommon.

By teh way, the person with the mistyping on DQ8 also ordered a gene test from Enterolab, since they tell you what gene you have, not just positive or negative. Enterolab found the DQ8 too.

They send their gene tests to the American red Cross.

But Enterolab does not test for the alpha chain, and misses all the 05* alpha chains. DQ7 often has a 05* alpha chain.

That is half a DQ2 celiac gene, and there is an increased risk for celiac.

Kimball tests for the alpha chain, but does not tell you what gene you have other than DQ2 or DQ8.

Dr. Hadjivassiliou found that 20% of his gluten ataxia patients were DQ1.

So, gene tests also have their limit.

If you do a search here, a person with the handle half full had access to the full versions of scientific papers, and posted all the other genes found in celiacs from a paper where they tested over 1000 european celiacs. There wer many with half genes, I think 6%, and 1-2% with other genes than the celiac genes.

Maybe you find it when checking my replies, as I replied in that thread.

They only contribute with about 40% of the risk for celiac.

nora

Wow -- I must admit that I do not have your understanding of tests, etc., but I most certainly understand the rest.

I am being beyond careful and treating myself as if I have Celiac, just to make sure all will be well. Thank you so much for your incredible information, and if you are ever willing to speak personally please email me through this website.

BIG HUG,

Lyn