Confused By My Results

[skbird]

I got my EnteroLab results today. I'm happy to not have a tested sensitivity to dairy but am a little confused by my gluten results. I appear to have one of the genes that could indicate gluten sensitivity and microscopic colitis but not generally associated with Celiac. I have no malabsorption. And my antibody level is the highest normal, so on paper, not sensitive.

I have been on a gluten-free diet for 5 months and for 2.5 years before that on a low carb diet which meant I was getting about 1/4 the amount of gluten that a normal person would (or that I ate before that point). I do feel better since going gluten-free, was just reflecting that I'd had only three migraines in the past 6 months now and all three were related to ingesting gluten. I used to have at least one a month, if not several. Also have not had IBS symptoms or constipation unless I'd had some gluten.

I can see that maybe my antibody level lowered after being gluten-free for 5 months and that any malabsorption I might have had would have healed in that time. But I'm confused that I seem to need extra vitamins always or I show signs of deficiency. I don't know much about microscopic colitis so I will do some reading on that. It sounds like imflammation of the intestines which would accurately describe how I feel when I eat gluten or nightshade foods - I often describe that feeling as my gut is imflamed or swollen or feels "sunburned".

Anyway, here are my results. Thanks for any thoughts.

Stephanie

+++++

Gluten Sensitivity Stool Test

Fecal Antigliadin IgA 9 Units (Normal Range <10 Units)

Stool Test for Autoimmune Reaction to Tissue Transglutaminase

Fecal Antitissue Transglutaminase IgA 7 Units (Normal Range <10

Units)

Quantitative Fecal Fat Microscopy:

Microscopic Fecal Fat Score: 67 Units (Normal Range

<300 Units)

Stool Test for Milk Sensitivity

Fecal anti-casein IgA antibody 6 Units (Normal Range <10 Units)

Gene Test for Gluten Sensitivity

Molecular analysis: HLA-DQB1*0602, 0303

Serologic equivalent: HLA-DQ 1,3 (Subtype 6,9)

Interpretation: Levels of intestinal IgA antibodies to gliadin, tissue

transglutaminase, and the milk protein, casein, were just below the upper

limit of normal and there was no malabsorption of dietary fat.

Although you do not possess one of the main genes that predisposes to

celiac sprue (DQ2 or DQ8), HLA gene analysis reveals that you do have a

genotype that can predispose to gluten sensitivity (HLA-DQ1, 3). This

genotype also can predispose to microscopic colitis.

Although your antibody levels are below the typical cutoff for abnormal

values (and hence there is no direct evidence of gluten sensitivity from

the antigliadin antibody test), 1 in 500 people are not able to produce

significant amounts of intestinal antibodies to gluten or other proteins

even though they may be immunologically sensitive to them. Because your

gene test revealed that you have a genotype that can predispose to gluten

sensitivity, and your antibody levels are nearly abnormal, if you have

symptoms or a syndrome known to be associated with gluten sensitivity, a

trial of a gluten-free diet would be appropriate.

[Rikki Tikki]

Hi Stephanie:

If you were off gluten for that long before doing the test that would lead me to believe that your tests would show a false negative.

You have one of the genes, I would just stay away from gluten.

Best of luck

Sally

[gf4life]

I agree with Sally. After 5 months gluten-free you are still producing some antibodies. If you had symptoms that went away when you went on the gluten-free diet, and they return if you eat gluten, then that added to the gene test result and the high end of normal antibodies, should be an answer for you.

How do you feel if you eat gluten? Do you get sick? There are some genes that cause gluten sensitivity, but are not accepted as Celiac genes at this time. There may come a time when they are all accepted as causing the same thing, a reaction to gluten that makes you sick.

Four of us in my family were tested through Enterolab. We all had varying degrees of health issues. We all tested positive for the antibodies and two of us tested positive for one copy of the DQ2 (the most common Celiac gene)and one of the DQ3 (subtype 7)(me and my daughter). One of my sons tested positive for two copies of DQ3 (subtype 7) and the other son tested positive for DQ1 (subtype 5) and DQ3 (subtype 7).

DQ3 (subtype 8) is what they call DQ8 and is the other Celiac gene. I believe that the other subtypes of DQ3 should also be looked at as causing problems with gluten and the DQ1 genes show up often enough to also be looked at for gluten problems. People who have these are typically refered to as non-celiac gluten intolerance. I don't care if you call it Celiac or not. You still need the gluten free diet for the rest of your life! I don't use the term Celiac very often when I talk to people about our illness. I say we are gluten intolerant. This covers all of us and doesn't get into the problem of the fact that we are not officially diagnosed with Celiac Disease.

God bless,

Mariann

[Rikki Tikki]

Hi Mariann:

I was just wondering what, if any are the benefits to having an actual diagnosis of celiac. I seems to me that a lot of people have not wanted the official diagnosis due to health insurance? I was just wondering because when I tell people I have celiac they look at me totally confused, same if I say gluten. If I say wheat they usually say, oh, you are allergic to wheat. It is more serious that a wheat allergy and yet I am dumbfounded as to how to explain this to someone. When eating out it seems really difficult so I have taken to either McDonalds or ordering just plain meat and potatoes.

I would rather not of had the actual diagnosis of celiac, but at the time I was too sick to care.

I hope you don't mind the question.

Sally

[skbird]

Thanks for your thoughts, Sally and Mariann. I was confused this morning because I have such bad IBS symptoms when I have gluten and was really surprised that my antibodies were as low as they were (supposedly EnteroLab's process can detect them for up to 2 years after going gluten-free) but after spending the day thinking about it I feel you are right. I admit I really wanted to have some strong results to show what I have been going through, oh, for *ages* now and that would help me feel more some kind of gratification. I'm sure that sounds weird but then if you've felt bad forever and finally believe you've found the answer and then your test seems a little on the low end, well it is a disappointment of sorts.

BUT I do want to say that I am SO glad I tested fine on dairy - I love dairy and was really getting worried that that was going to end up a problem for me.

My symptoms from eating gluten include IBS symptoms of cramping, irritation in my abdomen and feeling like food burns when I eat it, bloating, migraine, irritability. I tend to be more constipated but before I went gluten free I started having bouts of diahrrea over the past couple of years. Since going gluten-free I haven't had these reactions unless I've gotten hidden gluten and the only migraines I've had in the past 6 months were from eating shellfish (in a food challenge) and a couple of other accidental gluten ingestions. That's down from having several a month!

I did follow a low carb diet for 2.5 years before going gluten-free officially and ate only a fraction of the gluten I used to eat so I wonder also if that would have added to my low reading. I also react to a few other foods (see my signature) and this gene I aparantly have is associated with microscopic colitis so I'm going to read up on that. When I eat offending foods such as nightshades or gluten it often feels like my intestines are inflamed.

Like peeling away the layers of an onion. The info you shared about genes, Mariann, in your family was very interesting. I will be looking into that more just because I am fascinated by all the gene info we are now learing about and using in medical science. Very cool!

Take care -

Stephanie

[Rikki Tikki]

I know what you mean Stephanie, we just want an answer for what's wrong. I would say just keep up the gluten free lifestyle and if you feel better that's all you need to know for yourself, you feel better, and that's all that matters

Sally

[gf4life]

I was just wondering what, if any are the benefits to having an actual diagnosis of celiac. I seems to me that a lot of people have not wanted the official diagnosis due to health insurance?

I guess some people have been denied health insurance due to the diagnosis of Celiac. which doesn't make sense to me, since they will be healthier if they follow the gluten-free diet. I mean would the insurance rather have people who were not diagnosed and have to pay for all the resulting illness and complications?!?

Well for me some disadvantages of not being "officially" diagnosed as Celiac is that I have a lack of follow-up care. I would have liked to have some additional testing like a bone density scan, tests for nutritional deficiencies, and more in depth food allergy and intolerance testing to see if there are additional things bothering me. Without the diagnosis my doctor can't clear all those tests with the insurance, because they (the insurance) can't see why I would need them.

Another thing (although we haven't had any difficulties so far) is for children it helps to be able to have the diagnosis when trying to get the schools to comply with the child's needs on the gluten-free diet. I haven't had any problems in this area though. Thank God! I feel for parents who have to fight the schools to allow their child to be gluten-free at school. I gave the schools a copy of the Enterolab report to put in their file and a typed letter from me explaining the diet and their special dietary needs. I also met with each of my children's teachers the week before school started (when it was less chaotic) and gave them a copy of the letter and a list of foods they CAN eat and a condensed list of the common items that might show up in class that they CAN'T have (like cupcakes, cookies, playdough, etc.). I send a gluten-free sack lunch with my kids every day. They never liked the school lunch before going gluten-free, so this was not a big change for us. It might have been more difficult if they were used to eating the hot lunch from the cafeteria...I also provide some gluten-free snacks (Quaker Apple Cinnamon mini rice cakes!) for the kids to share in my daughters class for snack time. I have had to spend the most time in my daughter's kindergarten class, since they do a weekly "cooking" project. Most of their projects have been gluten things, so I brought her a gluten-free alternative that was as similar as I could make it. All the kids were so used to her having something different that this week when they had "Peter Rabbit Salad" (based on the veggies Peter eats inthe book!), a couple of kids asked me what was Hannah going to have? I explained to them that Hannah can have salad, and I brought the Ranch dressing so I knew it was a brand that was safe for her!

The older kids don't have snack time, so it isn't an issue except for parties. If I am aware of the parties, then I send a gluten-free cupcake with the kids. I keep some made in the freezer, so we just frost and decorate, then it is thawed by the time they eat it. If I am not aware of the party, then the teacher lets them pick something from their gluten-free emergency/snack box, which they keep in the classroom all year. I periodically restock the snack box. I have to restock it frequently for my daughter since she picks from it often for snack time, but not for my boys. The boys hardly ever get to have any of their special snacks. They are actually disappointed by this. Which I think is great, it means they don't feel like the "weird" kid, they feel like they are the lucky kid who gets to have candy and cookies while the other kids have to have cake! They still get cake too, but only if mom makes it!

Anyhow, whether you have a diagnosis or not, if you feel better gluten-free, then stay gluten-free!

God bless,

Mariann

[Rikki Tikki]

Thanks for the information Mariann!

Sally