Newly diagnosed and new here

karenswans · Post by **karenswans** » Sat Sep 03, 2011 7:19 am

Hi all,

I was diagnosed with LC on Monday. I was lucky enough to immediately find this message board and since then I have been reading, reading, reading. What great information! I have a few questions, if you don't mind:

1. About a year ago, I had an upper GI that found "elevated lymphocytes in the duodenum". They gave me a blood test for Celiac because of that result, but the blood test was negative. I asked my GI if the elevated lymphocytes in the duodenum was related to my LC, and he said he didn't think so. It seems to me that they could be related, and I was wondering if anyone else had seen something similar?
2. My doctor outlined several possible treatments, including steroids and pepto bismol. After reading here, I'm planning to try diet changes first. My only quandry is if I should do the Enterolab testing or the elimination diet. I know people have had success with both, so I keep going back and forth. (I guess this isn't really a question, is it?).

Anyway, I am sure I'll have many more questions as I move forward through this process. Thank you all for being here and starting this board!

-Karen

sarkin · Post by **sarkin** » Sat Sep 03, 2011 7:41 am

Welcome, Karen!

As you've probably already read... those blood tests for celiac are notoriously unreliable - because they only come up positive when the small intestine is severely damaged, and fortunately, yours is not! So it's possible that you have enough in common with celiac disease to make it worthwhile cutting out all gluten - and you can do that while you're still trying to decide between a straight elimination diet and Enterolab (their tests will detect antibodies to the gliadin component of gluten a long time after it's eliminated from the diet).

I did the Pepto Bismol treatment, and was able to tolerate it - I cut it down from 8/day much more quickly than is recommended, because I don't like meds in general, and I was reading that many people don't tolerate it at all. That, along with eliminating grains and dairy (except for occasional rice), really was my big boost toward stopping symptoms and starting healing. I did learn from Enterolab that I also have antibodies to eggs (so you can do elimination and testing). You will know quickly if you don't tolerate the Pepto, if you choose to try it. The steroid medication most here are using is Entocort, which is coated in such a way that it's only released in the intestines, so has a much smaller systemic effect on the body.

I find it mighty interesting that you had elevated lymphocyte in the duodenum. Sounds to me as though there was some irritation/inflammation there, and it sure seems possible that it's all connected... of course I'm just a patient, but I think the dividing line between 'celiac' and 'other stuff' is rather arbitrary. The gluten sensitivity that goes along with MC and celiac can affect all body systems - thyroid, joints, brain, skin... it seems like a pretty small leap of faith to connect it to the duodenum...

You sound ready to get this project underway and get your symptoms and MC under control. I am sure you will forge a successful path, and please ask whatever you need to along the way, and keep us posted on your progress!

Sara

JLH · Post by **JLH** » Sat Sep 03, 2011 8:33 am

Karen. We are glad you found us so fast.

I have LC, too. I found the PP on a Friday and by Monday I was gluten free. Don't be surprised if your doc(s) say diet has nothing to do with it.

I guess I made a believer out of my GI, since I never took the Lialda or Entocort that she offered me.

Post by **tex** » Sat Sep 03, 2011 12:14 pm

Hi Karen,

Welcome to our internet family. Yes, as you have already figured out, (even though your GI specialist isn't yet quite up to speed on this), MC is similar to Crohn's disease, in that, (as Sara points out), it can affect any part of the GI tract, from mouth to anus, and due to systemic effects, it can also affect most organs outside of the digestive system, as well. Many of us have mouth sores, a few members have signs of esophagitis, some of us have inflammation of the lining of the stomach, (gastritis), and many of us have small intestinal inflammation as part of our MC symptoms. MC commonly involves the ileum, and in some cases, it can be found in the other sections of the small intestine, as well.

Technically, the presence of an elevated lymphocyte count in the mucosa of the duodenum qualifies as a Marsh stage 1 rating. The Marsh scale is a rating scale for damage in relation to celiac disease, which goes from Marsh stage 0, (no damage), to Marsh scale 4, (total villous atrophy). This is exactly the same criteria used in the colon for diagnosing LC. IOW, a diagnosis of LC means that the colon has the equivalent of a Marsh stage 1 rating. Of course, the Marsh rating system is never used in reference to the colon, because there are no villi in the colon. Consequently, the damage in the colon can never exceed a Marsh 1 rating, so it would be pointless to rate it this way. I only mention the Marsh rating system to illuminate why your duodenum is showing exactly the same marker for Lc that exists in your colon. IOW, IMO, your small intestinal inflamation is most definitely related to your LC, whether your doctor realizes it or not.

Regarding deciding between an elimination diet and Enterolab tests:

If you're the type of person who can trust what your body tells you, and act accordingly, and you're willing to keep a detailed diary of what you eat and how you respond, the diet is cheaper. The problem is that even though it's a simple concept in theory, in the real world, sometimes we react just because our gut is so sensitive that it may respond adversely to many foods that it normally wouldn't have any issues with. As a result, sometimes the initial phase lasts for a long time, because we can't always be sure or our reactions, especially if we happen to still be eating a food that we are sensitive to, that we're not aware of.

The Enterolab tests, on the other hand, provide a definitive answer, that's highly reliable, (though not perfect - there are occasional rare inconsistencies, due to the statistical analysis methods used for determining the cutoff points for the test results). They also offer a DNA test that is priced at roughly half the cost of competitive gene tests, that will show you which gluten-sensitive genes you have, and whether or not you actually have a celiac gene, which might be of interest for your kids, and their odds of developing any celiac-type issues.

Again, welcome aboard. You sound like a self-starter, and motivated people get results, so I have a hunch you will soon have your symptoms under control, and you will know more about treating this disease than your GI doc.

Tex

karenswans · Post by **karenswans** » Sat Sep 03, 2011 1:16 pm

Thanks, all! This is a great community.

I already know I don't have the celiac gene, because I had a genetic workup by a company called Navigenics. (My employer offered it to everyone as a perk, and I did it about 2 years ago.). The Navigenics genetic profile didn't cover the genes that test for gluten sensitivity, so I still may have the genetic test done at Enterolab.

Tex and Sara, what you said confirms what I knew intuitively--the lymphocytes in the duodenum have to be related. I appreciate all of the information about the Marsh ratings--that was something I hadn't come upon in my reading yet.

I've had symptoms for more than 20 years. (I'm 45 now). Every time I've had a flare, it's been worse until it finally drove me to a GI to try to figure out what was wrong. I'm just glad to have a diagnosis and a path!

sarkin · Post by **sarkin** » Sat Sep 03, 2011 1:59 pm

Karen,

Good for you. I was glad to know for sure, too. That is so much bigger a bonus than 'losing' baked goods is a minus, isn't it?

The Enterolab tests were very helpful for me. Of course, they don't test every single food - MRT tests for many more, but again, not for every single food... so being astute and observant will come in handy whatever path you take (as you might expect!). I find that it gets easier and easier - not to know how I will react to everything, but to minimize risk (and in a socially easy way). I'm planning to do MRT testing this fall.

I did the "11 additional foods" test at Enterolab, and in my case it was the least helpful (though still somewhat interesting) - I think the other tests are more important, and those 11 foods can be evaluated by elimination/rotation or MRT. I am glad I did that test, and figured I was eating out SO much less, it was affordable - but if budget is a consideration, that's one way to play it.

I could be wrong - but you might be able to figure out your HLA DQ subtype, from your previous genetic testing. I would guess that to determine that you do *not* have one of the known celiac genes, they figured out which HLA DQ gene you *do* have - and maybe that's something you can dig out of some file somewhere. Though, as we've learned here, you don't have to have a 'true' celiac gene to become plenty sick from gluten!

20 years is a long time. Good for you, again, for putting your foot down.

Sara

Sharaine · Post by **Sharaine** » Sat Sep 03, 2011 7:49 pm

Karen,

It's great that you found us so quickly. I agree with Sara and Tex, you're a self-starter. If you can afford it, I'd encourage you to do the Enterolab tests. It will make finding your sensitivities easier and quicker.

Good luck and again, welcome to our internet family.

Sharaine

karenswans · Post by **karenswans** » Mon Sep 05, 2011 7:15 am

I've been pouring over previous medical results that I keep in a file to see if I have any information that might help me. I don't want to take the Enterolab tests if I already have similar information. I'm hoping some of you can help me puzzle this out.

I have an "IgG Antibody Assessment" from a lab called "US BioTek". (They did not do an IgE Antibody test, and I don't remember why now). I only showed one food with a moderate reaction, and that was eggs. The doctor told me my reaction to eggs was likely because I had recently had a slew of vaccines (which I guess are egg based) in preparation for a trip overseas. I showed a tiny reaction (almost non-existent) to banana and asparagus as well. I had no reaction to wheat or dairy, including casein. I don't see that they tested for soy.

I remember finding these results to be frustrating at the time, because I really wanted to show a big response to something I don't want to eat anyway.

You'll also recall I already had a genetic test done as well. The people at Enterolab were kind enough to look at it for me and told me that it shows I do not have the celiac gene, but it doesn't include the gene for celiac sensitivity. (For those of you interested, it showed "HLA-DQ2.5 with markers of 'CC'. The risk marker is 'T'. Can't say I fully understand that, but maybe someone does). It also tested for 9 other genes associated with celiac. I showed risk factors on a few, but they aren't the same genes that Enterolab finds interesting. I'm happy to share the full results with anyone interested.

So what to do now? Based on my Antibody tests, I have a sinking feeling that if I do the Enterolab testing it will come back with no sensitivities. It sounds stupid, but that is my worst fear. I just want to know what to do, even if it does involve giving up cake!

Thanks for any help anyone can give to help me figure this out.

Post by **tex** » Mon Sep 05, 2011 8:27 am

Karen,

Unfortunately, those blood test results for food sensitivities that you have are worthless for making treatment decisions for MC. The stool tests that Enterolab offers are the only ones that will reliably detect food sensitivities that affect this disease. The antibodies are generated in the gut, not in the blood, and they simply don't show up in the blood. The blood tests are effective for determining true allergies, (skin and respiratory reactions, caused by the production of histamines), but those tests won't provide much valid information concerning food reactions in the digestive system. Anti-gliadin antibodies are an exception - if you have a celiac gene, anti-gliadin antibodies will eventually show up in the blood, but it takes several years of reacting, before that happens.

You must have misunderstood what you were told by someone at Enterolab, (or else someone there made a mistake), because the HLA-DQ2.5 antigen is most definitely associated with celiac disease. In fact, it's the one associated with the DQB1*0201 allele, (the most common celiac gene).

http://immunology.ucsf.edu/immuno/cours ... isease.pdf

http://www.pnas.org/content/100/21/12390

The "T" risk presumably is associated with the fact that this gene predisposes to T-cell reactions in the intestines, (which is the same type of reaction that causes the inflammation associated with MC).

Tex

karenswans · Post by **karenswans** » Mon Sep 05, 2011 8:35 am

Thank you, Tex. This is the text of the email that Phyllis from Enterolab sent me:

"Thank you for sending these results for me to review for you. It is a
different type of genetic testing than we offer here, but the one thing
I can determine is that you do not possess the DQ2 Celiac gene. What it
does not say is exactly what your genes are at the DQB1 locus, which is
where the Celiac and gluten sensitive genes are located. In my opinion,
it would not be a bad idea to go ahead and have our genetic testing
done, if only to receive a more clear-cut idea of your possible risk for
not only Celiac, but also gluten sensitivity."

karenswans · Post by **karenswans** » Mon Sep 05, 2011 8:40 am

Also, my interpretation of the celiac gene test is this. I think they test everyone's HLA DQ2.5. Anyone that comes back with one or two Ts is at risk. I came back with two Cs, and no Ts, meaning I am not at risk.

Then again, I'm a psychologist, not a geneticist, and I find all of this to be highly confusing.

Post by **tex** » Mon Sep 05, 2011 8:57 am

I have no idea what those Cs and Ts that you refer to might possibly mean - they're probably specific to some sort of test parameters unique to the lab that you used, that may or may not actually be relevant.

I agree with Phylis, I've found her to be quite knowledgeable, and reliable. The HLA-DQ2.5 antigen is specified by the DQA1*0501 and DQB1*0201 genes. As Phylis says, we need to know exactly what DQB1 allele you have, because that DQB1*0201 allele is critical in the determination of celiac susceptibility. You may have received invalid results on that previous test. I don't know what they charged for the test, but it appears they didn't provide much useful information in the results. Gene test results are normally not reported in that format. It makes me wonder if the test has any real value.

Tex

karenswans · Post by **karenswans** » Mon Sep 05, 2011 9:24 am

Thanks again, Tex.

The Navigenics genetic report has been helpful in general (it flags certain things you have a genetic propensity toward. Like I have an unfortunate genetic propensity toward Alzheimer's, for example). But it's pretty difficult to dig into the particulars and understand them.

I just ordered my Enterolab tests! I'm starting with the test for the "big 4" and see what that gets me.

Post by **tex** » Mon Sep 05, 2011 11:06 am

Karen wrote:I just ordered my Enterolab tests! I'm starting with the test for the "big 4" and see what that gets me.

IMO, that will save a lot of time, and a lot of wondering about whether or not you actually need to avoid those foods.

I assume that you have the APOE-4 gene. If so, you might be very interested in the article at the following link, if you haven't already studied it. I have no idea what you think of Stephanie Seneff's writings on the topic of Alzheimer's, but IMO, she is right on target. Some of her information might help you to avoid the disease. I was once diagnosed with Parkinson's disease, (incorrectly, IMO - because most neurologists aren't aware of the connection of gluten-sensitivity with peripheral neuropathy), so I'm very interested in this area of study.

http://people.csail.mit.edu/seneff/alzh ... atins.html

Associated information:

http://people.csail.mit.edu/seneff/EJIM_PUBLISHED.pdf

Some of her other works:

http://people.csail.mit.edu/seneff/

You're most welcome,
Tex

karenswans · Post by **karenswans** » Mon Sep 05, 2011 11:21 am

You got it! The APOE4 gene it is. I only have it from one parent, luckily. The articles you link are fascinating. I've got a lot of reading to do.

My Dad has peripheral neuropathy, and was just recently diagnosed with vascular dementia "with Parkinson's characteristics." Makes me wonder if his problems are also at least partially related to gluten.

It's weird how since I landed on this board, everything seems to be clicking into place. Before this, I thought I was the only person in the world with these weird symptoms, but as I read here I keep saying, "that's just like me!" I remember one of the first posts I read here was someone saying how they would bloat so fast they could feel their skin stretching, and that it looked like they were 7 months pregnant. That is the post that made me continue reading, because that's happened to me for years.