woolwhippet

Hi all,

I have never been officially diagnosed as having celiac disease and the genetic test I had done showed that I was DQ4/DQ7. BUT if I eat gluten I get sick, so I don't eat it.

Last week I found myself in emergency with stomach pains. I wound up being kept over night and having loads of bloodwork and a ct scan.

There is something going on but the drs can't put their finger on it. I have low folate, elevated liver enzymes, and chronic diarrhea. i have been sick on and off for about two years and I had hoped that a strict gluten free diet would have solved all my problems.

My questions for you educated folks are: 1. anyone ever hear of something similar? and 2. could accidental gluten cause this? 3. can gluten cause other reactions beyond classical celiac disease?

Thanks very much.

Lenore

I think Germany does it up right!

Where I am, in Canada, Boxing Day has become a major shopping frenzy. Amazing sales. When I was a child boxing day was a lovely day when everything was still closed and we spent the day playing board games and visiting friends. What does the USA have the day after Christmas?

I was horrified to watch my dad digging the filling out of an apple fritter while his wife ate the crust.

Andrea

Ha ha ha! The image of this is great! I can see your Dad eating that filling and passing the empty shell to his wife--true marital harmony. It's sad that you won't have that food haven you were hoping for. I also truly believe in the "spectrum" theory of gluten sensitivity. My Uncle is super super sensitive and of his 4 children one is slightly sensitive and one moderatly sensitive and the other slightly more than the other two. Fascinates me.

I've been there! I don't know how to make the glutening feel better--seems to be a matter of time thing. But, my secret to not needing those foods I should avoid is to have even better alternatives in the house and to try to never let myself get so hungry that I don't care what I eat.

I hope you feel better soon!

Go gluten free for a good amount of time. I am about 8 weeks gluten free and the mystery rash on my buttocks and scalp has really cleared up--just purple marks and a few spots with the surface area of insanely itchy spots being greatly reduced. For years I thought I had an odd ingrown hair problem or psorisis or something but was too embarassed top talk to my dr. I'd never have connected the rash with what I was eating. I gave up gluten for digestive reasons and, go figure, the rash starts to clear. I am very happy to be gluten free and not have to itch in the wrong places all the time!

I am so happy for you. You are lucky to have wonderful parents but they are alo lucky to have a child who appreciates their efforts!

Hi Jen, you can still be reacting even with a neg blood test. People here will attest to that. Listen to your body--you are probably right!

This is very clever! If you try it please tell us how it worked.

Here is an excerpt from the University of Dublin, July 07. I was excited to read it! Anyone know more or is this brand new?

"A new study which involves joint efforts of researchers in UK, Holland and Trinity College Dublin has resulted in the identification of a new genetic association of coeliac disease with the immune-related IL-2 and IL-21 genes. This study provides the first clear evidence of a second gene for coeliac disease. Trinity researchers Dr Ross McManus, Prof Con Feighery and Prof Dermot Kelleher contributed to this work which now permits new insights into the mechanism of the disease.

Patients with coeliac disease cannot eat bread, pasta and other wheat containing foods. Understanding of the mechanism of disease could pave the way to new ways of treating this condition.

This is a very exciting development that should offer a new level of insight into this common and debilitating condition. More work will be required to track down the exact gene involved. However it shows the value of new genetic research methods in tackling these sorts of diseases and offers hope to the many patients involved in the study that progress can be made in understanding and treating the disease"

Thanks again Nora!

I just have to say how much I appreciate all of you here. This board has given me the courage to listen to my body and the support to stick with a diet that has made all the difference to my health. If I couldn't come here and see that there are others out there benefiting from and sticking to a gluten-free diet despite neg blood work and gene tests who knows how long I would have suffered!

So, thanks.

Thanks all for the great suggestions. I will talk to her about it--you are right, it's better she know from me because there is a lifetime of family functions ahead. This is such karma for me because I used to be a little critical of "those people" with "food issues". Now I am one! Serves me right.

I have a lovely mother in law who is bending over backwards to accomodate me. Last sunday she took the time to prepare 'gluten free' meal and dessert for me. I have had d all week and I know it came from that meal. She is a very strong minded woman and for her to go to all this trouble is a big deal and I don't want to insult her but I also can't continue to be glutened. I was wondering how to tactfully approach this. Is there a pamphlet out there designed to educate family?

I am feeling for you! I really like the advice the doc gave you. Sounds like a very open minded guy.

I gained a big chunk during my second pregnancy and held on to it well after. Be VERY kind to yourself--keeping in mind that sleep interuptions can cause people to hold on to weight and with toddler twins I am sure you have those!

Get the gluten-free diet going (which will may cut out a bunch of incidental calories for you) and try to think of it as a gift to yourself. When I first went gluten-free I made the mistake of feeling a little sorry for myself thinking I was missing out on all that good stuff (really just junky food) and now that I have stuck with it and feel so good I actually feel a little sorry for the people that eat too much glutenous food! This board has so many wonderful people who will gladly support you.

I have lost 25 pounds and still have 5 to go. My youngest child is 5! I have had to fit in fitness around all the other things mothers do these days. I do squats while emptying the dishwasher and everytime I walk down a certain hallway in our house I do lunges. I keep a jumprope in the kitchen and squeeze in ten minutes here and there. I clean house while wearing a heart rate monitor and go as fast as I can tring to burn as many calories as possible. It sounds crazy but it's working for me. With work and kids and a house to run it's often difficult for us mothers to go off to the gym for an hour everyday.

Take care. Be kind to yourself!

I had the ttg-iga test done and was told the results were negative. I had 4.0 and to be positive (I am assuming positive for possible celiac disease) you would need to be 10.0 or more. Then today I noticed that the lab who ran the test had redone their website and one of the improvements was to post all reference ranges for the tests they do. According to them normal is .7 to 4.0.

My question is: what is this area between 4.0 and 10.0? Am I misunderstanding something here? Does the 10.0 correlate with villous atrophy?

Well, the test I gave myself was hardly scientific but it did create a reaction that was measurable. I did an overload test that I read somewhere and do not reccomend. I ate 3 cinnamon buns (made without dairy)n on a wed afternoon and seemed fine until thursday at 1pm when violent 'd' struck. I had done the same test 6 months ago with toast and had the same result. I am a really slow learner. I really didn't beleive it was the gluten making me sick. But it took 12 days with no gluten at all for the d to stop.

I have lost 4 pounds in the last eight weeks. I think I have lost this weight for 2 reasons. The first is that while I was so sick I think my body thought it was starving and held on to every spare calorie. Now it's not starving and the excess is coming off. The second reason is that I feel well enough to excercise and have energy for all kinds of things (like taking my kids skating etc) that I just couldn't do before. I am not dieting at all. In fact, I am really enjoying food knowing that I won't be sick after I eat!

It's so frustrating to backslide in fitness! I am on week four of regaining strength and it's going pretty well. I had a personal trainer/physiotherapist/ex national gymnast get me started with back to basics strength routine that I can do in my home every day for ten-15 minutes coupled with cardio (walking) 3x per week. I think having a trainer start you off is a great idea but make sure they understand that you are recovering from an illness and know how to guide you slowly through the process.

I am self directed now--just needed guidance to get started. You sound the same and you also sound very determined so I am sure you will have great success.

Remember to be kind to yourslef too! You have been sick. It took a long time to lose your fitness but I think you will be surprised at how quickly it will come back.

Here is some info I found after my own neg blood test:

"if a person stops eating foods with gluten before being tested, the results may be negative for Celiac Syndrome even if Celiac Syndrome is actually present. About 2% of people with an IgA deficiency have false-negative results.

The lab that does the testing does matter. Some labs have "normal" ranges set so high that practically no one tests positive even with biopsy-provable Celiac Disease. Remember, antibodies present means there already is tissue damage. People with levels just above baseline seem to respond to a gluten-free diet."

Dr Rima, Open Original Shared Link

I am English and Irish with a touch of French Canadian and First Nations.

Yes--my arms are smooth now! How bizarre.

YES! One of the Dads at school had celiac disease as a child and says it went away when he bacame an adult. Maybe it was an allergy instaed as those can resolve sometimes. Either that or their intestines have healed up and in a few years from now they will be sick again.

I'm a DQ7. It's taken me years to discover what was making me sick. Your daughter is lucky to have a heads up!

From the research I have done it seems that the DQ7 code's very similar to the DQ 8. I have this hunch (and I am not a scientist so if what I say is wrong please correct me someone!) but I hypothesize that it has something to do with the DR B1 type as well. I think if you are DR4-DQ7 (rather than DR 11 etc) THATS they key. I came up with this after examining the chart on this site:

Open Original Shared Link . I see a number of people posting here with DQ7 and given that it only occurs in 8.5% of the population it must mean something.

Fourteen is such a tough age. If you have been pushing the diet you might want to consider backing off the discussion and just clearing the house of gluten while also providing loads of tasty gluten-free stuff that teens will eat like muffins, pizzas, chilis. I wouldn't tell her you are doing this--you don't want a power struggle--just switch over naturally. I would show her the DNA evidence in a scientific way (no emotion) and tell her that you trust her to take care of her body (even though your mind is screaming the opposite!). It kills me to say it (because I wish I'd have known to stop gluten so young and because I have 2 kids of my own whose health I worry about) but I don't think you can make her do anything she doesn't want to do at this point. Your power is in providing and serving gluten-free food and your concession is not making her food choices outside your home into a power struggle. You want to stay on her side so that when she does figure out how sick gluten makes her she has you to turn to.

Good luck to you. I was a mule of a teenager myself...

Me! I've done it. I started it only after much frustration with chronic 'd' and a bunch of other symptoms. I was really skeptical but 4/5 days after starting the diet I had a solid bm and then reliably solid ones for the duration of the diet. The food is good and actually not that restrictive once you get used to it. I honestly didn't beleive I'd be able to tolerate the yogurt but I did! One night I sat drinking a glass of red wine and eating grapes and brie--all legal foods--and it felt decadent.

I only did it for 3/4 weeks and then I jumped in and started to add new foods (rice, potatoes, etc). For me, I do better with no lactose, soy, and gluten. It was a good starting place for me and whenever I feel poorly I scale back to the diet.

I have gone crazy trying to understand the science behind it. I can't tell you why or how it works but I can tell you that this diet changed my whole perspective on food. When I first went gluten-free I loaded up on all those fancy products at the grocery store--breads, mixes, cookies, pastas--and the specific carbohydrate diet reinforced for me that whole fresh naturally gluten-free foods are best, especially in the early healing period.

Hope this makes sense to you. It's past my bedtime...