Daughter's Enterolab results

irisheyes13 · Post by **irisheyes13** » Thu May 12, 2011 12:08 pm

I received my 18 y/o daughter's Enterolab results today, exactly 3 weeks from the date they received it. I sit here dreading the conversation I will need to have with her and expect tears and frustration which breaks my heart. This is the same daughter who was just recently diagnosed with type 1 diabetes. She just isn't getting a break it seems. She, of course received a non-celiac GS gene from me (603) and also has a main celiac gene as well.

Tex, if you would like to add her results to the database, it's fine. I also included the paragraph in the report regarding the interpretation of anti-gliadin Iga because I believe they have changed the wording. Also the paragraph regarding fecal fat scoring- I'm curious about her elevation in her fecal fat score and whether there could be a correlation to diabetes and the stress on her pancreas from this autoimmune disease process.

A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value
Fecal Anti-gliadin IgA 35 Units (Normal Range is less than 10 Units)

Fecal Anti-tissue Transglutaminase IgA 18 Units (Normal Range is less than 10 Units)

Quantitative Microscopic Fecal Fat Score 391 Units (Normal Range is less than 300 Units)

Fecal Anti-casein (cow’s milk) IgA 16 Units (Normal Range is less than 10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0302

HLA-DQB1 Molecular analysis, Allele 2 0603

Serologic equivalent: HLA-DQ 3,1 (Subtype 8,6)

Interpretation of Fecal Anti-gliadin IgA: The level of intestinal anti-gliadin IgA antibody was elevated, indicative of active dietary gluten sensitivity. For optimal health; resolution or improvement of gluten-induced syndromes (mainly falling into six categories abbreviated as NAAAGS – neuropsychiatric, autoimmune, asthma, abdominal, glandular deficiencies/hyperactivity or skin diseases); resolution of symptoms known to be associated with gluten sensitivity (such as abdominal symptoms - pain, cramping, bloating, gas, diarrhea and/or constipation, chronic headaches, chronic sinus congestion, depression, arthritis, chronic skin problems/rashes, fibromyalgia, and/or chronic fatigue); and prevention of small intestinal damage and malnutrition, osteoporosis, and damage to other tissues (like nerves, brain, joints, muscles, thyroid, pancreas, other glands, skin, liver, spleen, among others), it is recommended that you follow a strict and permanent gluten free diet. As gluten sensitivity is a genetic syndrome, you may want to have your relatives screened as well.

Interpretation of Quantitative Microscopic Fecal Fat Score: A fecal fat score greater than or equal to 300 Units indicates that an abnormally high amount of dietary fat has passed undigested and/or unabsorbed into the stool. Malabsorption of dietary fat almost always is associated with malabsorption of all other nutrients as well (protein, carbohydrates, vitamins, etc.). When associated with gluten sensitivity, elevated fecal fat usually is due to gluten-induced small intestinal functional damage and subsequent malabsorption; this does not require there be villous atrophy present. However, deficient production of enzymes by the pancreas can also be associated with celiac disease or non-celiac gluten sensitivity with autoimmune attack on the pancreas, causing maldigestion and malabsorption of dietary fat and other nutrients. Some other causes of exocrine pancreatic insufficiency include chronic pancreatitis from any cause (alcoholism being the most common), pancreatic resection, pancreatic cancer, or common bile duct obstruction. Pancreatic insufficiency as the primary cause of fat malabsorption usually causes significant elevations of fecal fat values, usually into the moderate (600-1000 Units) or severe (>1000 Units) ranges.

sarkin · Post by **sarkin** » Thu May 12, 2011 12:42 pm

Kelly,

You must be somewhat heartbroken, though not entirely surprised. I'm sorry you had your worst suspicions confirmed. It's easy (from where I'm sitting) to see the silver lining, which is that knowing this now will enable her to avoid significant health problems down the road. But it's hard news, for a lively young woman heading off to college, and already making big adjustments to her Type 1 Dx. (Does this mean her father has the celiac gene?)

I know you'll find the perfect, loving way to get you both through this conversation... meantime I'll be thinking of you and your girl.

Love,
Sara

dgshelton · Post by **dgshelton** » Thu May 12, 2011 12:51 pm

Kelly - I'm so sorry! I'm waiting to get my results, but I feel like mine will be the same. I can't imagine what it would have felt like to be told...no sugar and no bread, pasta or pizza...at the time I was diagnosed with diabetes. Since she is newly diagnosed, it will be interesting to see how the a gluten free diet will affect her blood sugar.

Big hugs for both of you!

Gabes-Apg · Post by **Gabes-Apg** » Thu May 12, 2011 2:01 pm

Kelly
i can imagine you have a heavy heart reading those results, and knowing what you know based on the journey of all the people on this site.

Like all of us, she will have to go through the stages of acceptance, if she is not having bad symptoms now, it may be difficult to 'sell' the " prevention is better than management of chronic symptoms later" situation.

big hugs to both of you, both of you have dealt with alot over the past 4 - 6 months

Kari · Post by **Kari** » Thu May 12, 2011 3:13 pm

Oh Kelly - so very sorry your daughter (and you indirectly) has to deal with all the diet restriction. Somehow, it seems that it will be a lot harder for her because of her age. Hopefully, she'll adapt well - from your previous posts, it sounds like she is a real trooper.

As you may know already, when I discovered that I have double gluten sensitivity genes, I had my son and his whole family tested (DIL and 3 grandchildren) at Enterolab. They are not symptomatic, but since they have observed how much I have been suffering, they went along with being proactive. Lo and behold, they all had high scores for gluten, and have since made their household gluten free. They are eating a much healthier diet than they used to, with lots of veggies and fresh fruit. My son has always suffered with airborne allergies, but somehow this year, after dropping gluten, he is doing much better. The more I learn about it, the more I believe that gluten is pure poison to our bodies.

Anyhow, thinking of you and your daughter, and wishing both of you lots of luck with getting through this transition.

Love and hugs,
Kari

nancyl · Post by **nancyl** » Thu May 12, 2011 6:26 pm

I feel so bad for both your daughter and you. You both have had a lot to deal with these past few months. Sometimes kids fool you though and she may take it better than you think. It's sort of like a new adventure that we're on, searching and searching for the right foods to eat. In the end she will feel a lot better for eating a healthy diet and it will become second nature to her. Meanwhile though, she has had a lot to take in. I have a friend with 5 kids who all have celiac, they are all high school and college and some out of college and they have gotten so use to it, it's like second nature to them. Maybe it's easier when your diagnosed at a younger age.

I'll be thinking of you and hoping all goes well when you talk to her.

Hugs to both of you,
Nancy

Gloria · Post by **Gloria** » Thu May 12, 2011 9:00 pm

Oh, Kelly, I'm so sorry to read your daughter's results. I don't think I would have had a good attititude about having to damatically change my diet at age 18. The one good thing is that she'll probably have better control of her diabetes by following a GF diet, as long as she watches her carbs. Doing without dairy is a sacrifice, but as you have discovered, there are alternatives.

I hope she can look at this positively, but I know that it was difficult for me to read my own Enterolab results. It may take a while for the implications to sink in.

Good luck with your conversation with her. I'll be thinking of you.

Gloria

irisheyes13 · Post by **irisheyes13** » Fri May 13, 2011 8:34 am

Thanks for the support guys:) It really is hard to find the words to talk with Logan so that she understands the gravity of what she is facing without completely disillusioning her. She's such a hard worker and a perfectionist and wants to please everyone. I haven't spoken with her yet because she's in the middle of her senior project, her finals for the year and tonight is prom with a weekend of festivities planned. I've decided to wait until Sunday or Monday to talk with her. Although there is so much going on, I don't want to continue to put it off.

It's not going to be an easy task once she leaves for college living in a dorm and eating from a cafeteria for all her meals and keeping compliant with a gluten and dairy free diet while counting carbs and watching her glucose/insulin levels on her own. I'm not even sure how to advise her.

If she were at home I could keep the kitchen well stocked and cook ahead but this is going to be a challenge for sure and that's if I can get her to commit to it.

As I look back, there are quite a few signs of gluten intolerance. Although she has always been slim, she has had a slight bloat to her belly (she calls it her food baby;). She also has had chronic skin problems on and off which I have always attributed to her nickel allergy but now I'm not so sure. Since January she has had a rash along her jaw line on either side of her face that is red and dry as well. We thought it was dry skin during the winter months. The endocrinologists in the hospital attributed it to diabetes but it still hasn't cleared up completely even with topical steroids. She frequently will have missed periods and it wasn't until I need to get a stool sample for Enterolab testing that I discovered that she will go days without a bm! She said it has "always" been that way. I'm not sure that all of these issues are directly related but it sure could be.

My hope is that if I can get her to commit to keeping all gluten and dairy out of her diet for a month or so, she will see and feel a difference personally and a positive reflection in her diabetes management as well. If she does, it should help with sticking with the diet a bit easier and prevent further damage.

Kari- I do remember your son and family having their testing done after your results. It must be so comforting to know that they are all being proactive in their approach and since your grandkids are younger, hopefully they will grow up with a healthy approach to living gluten free and will view eating gluten as odd rather than bittersweet. It does seem to be a poison to all of us on some level or another. Glad to hear your son's allergies have improved since the diet change!

Again, thanks for the words of support-you all are wonderful and it helps more than you know. If anyone knows of any good books on the subject, please let me know. I feel like I need to present her with a bit more than my knowledge on the subject. I did find a blog entry of a young woman who has both type1 (diagnosed at 6 y/o) and celiac disease (discovered while in her sophomore year in college) and she tells her story which hits home and should help but I'm hoping I can find more reading she can relate to that will have a positive reinforcement.

Love,
Kelly

Pat · Post by **Pat** » Fri May 13, 2011 8:49 am

Kelly,

I am so sorry for your daughters results but maybe she will feel so much better and lose the belly that she will be willing to comply. I would recommend that she meet with a dietician to advise her on all of the above. They are more qualified to assist her than any of us, well, except for Mary Beth. Of course they will have to buy into the Enterolab results. I think you are smart to wait until after this weekend. Hope she has a wonderful prom and hope you just soak it all in. Take pictures, etc. Been there, done that and it is so much fun!

Pat

Pat · Post by **Pat** » Fri May 13, 2011 8:51 am

Also she may need gluten free shampoo and face cleanser.

Pat

Post by **tex** » Fri May 13, 2011 9:40 am

Kelly,

I too am sorry for all the test results, and the restrictions that they will impose upon your daughter, but knowledge is power, and I'm sure that she will be much better off with this information in mind, than she would have been without it. I agree that delaying this discussion until all of the excitement is past, will provide a much better opportunity for her to focus on what it actually means, and it will be less likely to cause an information overload at a time when she already has more than enough things going on.

I agree with Pat that the right dietitian might be able to provide a lot of helpful advice about handling her diet, especially while away at college. The trick will be to figure out how to locate a qualified individual who thoroughly understands all the issues that your daughter is dealing with. Maybe Mary Beth can offer some advice on how to locate someone in your area who would be best qualified.

Enterolab has indeed changed the wording in their discussion of the results, and I appreciate your bringing that to our attention.

Thanks, I've added her results to our collection.

Love,
Tex

JLH · Post by **JLH** » Fri May 13, 2011 12:04 pm

Did EnteroLab give you any information about the 0603? I didn't know about it until Wonder Woman posted about it. You can do a PP search.

Zizzle · Post by **Zizzle** » Fri May 13, 2011 12:38 pm

Kelly,
You may be interested in following the progress of the TEDDY study at NIH. They are hoping to learn why some children get Type 1 diabetes.

http://www2.niddk.nih.gov/AboutNIDDK/Di ... #niddknews

MBombardier · Post by **MBombardier** » Mon May 16, 2011 8:35 pm

Kelly, I, too, am very sorry to hear this. As a mother of older children who have to be compliant all on their own to a diet, I can totally sympathize with how you feel. Perhaps if you were able to persuade her to do a test period where she could tell for herself if going GF makes her feel better and helps with other symptoms that might help. The reason I say that is that we had actually forgotten that my almost-13yo had such horrible acne (she still has some pimples) until we looked at a photo of her from late January. Wow!!

I discovered that my 33yo daughter is not GF by seeing her eat crackers at a wedding on Saturday. She's talking the talk, not walking the walk, and being already intolerant of corn, it does not bode well for her long-term health.

What is it that they say about sales? You have to hear the same message nine times before you even really hear it? I want to encourage you--and myself at the same time--to continue to make the case to our children for going gluten-free for health.

irisheyes13 · Post by **irisheyes13** » Tue May 17, 2011 8:57 am

Thanks again for all the input. I have had a brief discussion with my daughter regarding her results and as expected, it wasn't received well. She's very angry and I'm giving her some space to process it before we move forward with the how's and why's of it all. I spoke with Phyllis who is the nurse at Enterolab briefly yesterday and she feels that in light of everything that we have going on with the diabetes management and living in a dorm away from home, the focus should be on a strict gluten free diet and then tackle the dairy after she is managing the gluten free lifestyle.

I have found a dietitian who specializes in diabetes and also has celiac disease herself. I haven't spoken with her on the phone but will reach out to her and do a phone consultation soon. Thanks for the idea Pat and Tex.

Joan, I have not found any additional information regarding the 0603 gene but did read some of the threads regarding it. I wasn't aware of the link to neurological issues so thanks for the "heads up". Hopefully by living a gluten free lifestyle, none of us will experience these issues.

Zizzle- Thanks for the link. I have spent an incredible amount of time reading studies on diabetes but haven't seen this one. Tudiabetes is a forum which has been extremely helpful but I haven't had much time to extend my reading to diabetes and celiac/gluten sensitivity together. It seems there isn't enough hours in the day lately.

Marliss- Sorry to hear about your daughter's lack of commitment to her diet. I fully expect that I may be dealing with this down the road as well unfortunately. It's a very thin line we walk as a parent in trying to get our adult children to understand the implications of this diagnosis and how to incorporate it into every day life with no exceptions (a little bit of gluten won't hurt attitude) and not alienate them in the process.

I have ordered the book "The Gluten Connection" by Shari Lieberman and am going to give it to my daughter to read so that she is getting the education and specifics from a neutral party with the hope that it will have a greater impact and some of the anger won't be directed at me and my faulty genes;)

On a lighter note, she had a blast with her prom festivities and I have a picture that I'm trying to post but not having much luck.