Looking For Advice

[Newgs]

Hello, recently underwent some blood tests at work and was told I have a sensitivity to gluten. My HLA DQ2 came back positive. So I was told to go a gluten free diet.

I am confused what is the difference between gluten sensitivity and celiac? Is it the same thing? Do I have to stay away from gluten for the rest of my life. I have had numerous health problems over the years, including anemia, I have osteopenia (-2.3) on dexascan two years ago at age 45, suffered from depression a number of years ago, and have suffered from digestive problems most of my life.

On a positive note, went gluten free as of last Saturday, two days after finding out. Today is a week and while I am not finding it too difficult, I find it hard to remember at times, like when I am reaching to taste something or while I am cooking for family etc.

Looking for any advice anyone wishes to offer me on this subject. I would like to know if there are additional tests to positively diagnose me besides the gene test (is there such a thing as a definitive diagnosis). I read on my results that approximately 39% of the population can carry the gene and not develop celiac. Should I get my sons tested, etc.

This came as a complete surprise to me, and am very confused. A nurse at work suggested that since I am only gluten sensitive I should ease into the gluten free diet. Right now I am very confused

[GFinDC]

Hi, welcome to the gluten-free club!

You could post your test results here and see if some kind could can interpret them for you.

There is an endoscopy test where they take several biopsy samples to check them for villi blunting.

Gluten sensitive doesn't mean you are ok with gluten. I am just guessing but it probably means the doctors saw elevated antibody numbers on your celiac tests. They may have also found low levels of vitamins like Vit B-12, Vit D or low iron. These low Vitmain levels can be caused by malabsorption due to villi damage.

The testing is not 100% accurate. So even a endoscopy can have a false negative. The diet is a big learning experience when starting but like anything else, you can learn it after a while. You just need to keep going and do some research and learning. This board is a great place to do that.

Merry Christmas!

[mushroom]

Yes, it would be interesting to see your test results (and the ranges the lab uses) to see where this "sensitivity" came from. Normally a gluten free diet is not recommended solely because you have a celiac gene.

There is a broad spectrum of gluten sensitivity. It could be that you fall in the 'indecisive' range where you are neither positive nor negative, but 'possible'. People who know are starting to consider people who fall in this range as latent celiacs, and believe that given long enough, and enough gluten, you will move into the positive range. However, the testing is very inaccurate, with a 20% false negative rate, so even people who test totally negative for celiac can be very gluten sensitive and suffer as much damage, or more than, those with a celiac diagnosis. Hence, more and more doctors are starting to suggest that you follow a gluten free diet if you feel better on it. But there is a very wide range, also, in how doctors handle the diagnostic process. Some will order an EGD with biopsy if you fall in the 'possible' range, some will tell you to just eat gluten free, others will tell you to go away and be happy, you don't have celiac. Most of us here will tell you to follow the gluten free diet regardless of the test results and see if it works for you, because we don't trust the testing - and you have been presumably tested because you have symptoms indicating a problem with gluten (and those you list are fairly classic outcomes of gluten sensitivity). Are you yet noticing any improvement being gluten free? (or at least probably at this early stage one should say trying to eat gluten free)?

If your tests and your response to the diet indicate that gluten is a problem, yes you should have your children tested also.

[Newgs]

Hi, welcome to the gluten-free club!

You could post your test results here and see if some kind could can interpret them for you.

There is an endoscopy test where they take several biopsy samples to check them for villi blunting.

Gluten sensitive doesn't mean you are ok with gluten. I am just guessing but it probably means the doctors saw elevated antibody numbers on your celiac tests. They may have also found low levels of vitamins like Vit B-12, Vit D or low iron. These low Vitmain levels can be caused by malabsorption due to villi damage.

The testing is not 100% accurate. So even a endoscopy can have a false negative. The diet is a big learning experience when starting but like anything else, you can learn it after a while. You just need to keep going and do some research and learning. This board is a great place to do that.

Merry Christmas!

Tests done 11/23/10

okay thanks refererence range

my b 12 is 604 211-946 pg/ml

selenium is 190 40-150ng/ml

zinc is 70 68-161 ug/dl

vitamin D 28.3 32.0-100.0 ng/ml

vitamin C 1.0 2.0-20.0 mg/l

vit b1 6.4 2.7-13.3 ng/ml

vit b6 5.5 5.0-50.0 ng/ml

methylmalonic acid serum 0.17 0.00-.40 umol.l

vitamin E 713 600-1700 ug/dl

Beta Carotene total 16.3 4.0-30.0 ug/dl

vitamin K .36 0.10-2.20 ng/ml

vitamin b2 3.7 3.0-15.0 ng/ml

HLA-DQ2(DQA1*-05/DQB1*02) Positive

HLA-DQ8(DQA1*03/DQB1*0302) Negative

HLA Variants detected:

HLA-DQA1 04

HLA-DQA1 05

HLA-DQB1 0201

HLA-DQB1 0402

My hgb in October was 10.4 11.5-15.6

mcv 70.9 80.0-100.0

mch 21.3 25.0-34.1

But received two IV iron infusions sometime at the end of October so now I am at

hgb 11.6

mcv 77.8

mch 24.3

Visited the hemotologist at the end of November and he said that the iv iron was working.

Have had anemia for a long time, cannot take iron tablets very hard on stomach.

Thank you

[Jestgar]

None of those have anything to do with gluten. Are there more tests? It seems odd that anyone would suggest a gluten sensitivity without ever testing for a gluten reaction.

[Newgs]

okay thank you

[mushroom]

Jestgar is correct. Not one of those tests measures your body's response to gluten; however, many of them that are low and need supplementation are lows that are typically seen in those with gluten sensitivity and would suggest that it would be appropriate to run those tests, the celiac blood panel, to find out. He did do the gene tests which shows you have an inherited susceptibility to develop celiac disease, but it is strange that he would not test for it. Now we are confused too

[Newgs]

Okay finally got some additional results

anti endomysial <1:10

gliadin igg, abs 23 lab normal is <20

gliadin iga, abs 24 lab norma is <20

So what now?

Thank you.

[Fire Fairy]

I'm afraid I can't interpret anything myself but I wanted to say hello. I'm still new myself but I've been learning a lot, if I can help in anyway I'll be all too happy.

One thing you will need to do is make sure the items you use for your food in the kitchen are kept gluten free. Cross Contamination (CC) will get you if you are not careful.

[mushroom]

Well both your IGA and IGG were what doctors would probably refer to as a 'weak' positive. But in my book, a positive is a positive, and what is 'weak' today will probably have gained strength by next year if you continue to expose yourself to gluten. With a positive gene and positive blood test I would consider myself celiac and begin the diet immediately. Actually, I believe you have already done so. Yes, should test your children for the DQ2 gene and watch for any signs of symptoms in them.

[Newgs]

Oh I was under the impression that a weak positive meant I could cut down on gluten products instead of eliminating them completely. I have eliminated most of it except for a couple of occassions where I completely forgot. It is proving to be time consuming, expensive and difficult to remember especially when cooking for the family. Its been a a couple weeks or so but I am becoming food phobic, fearing what I eat. It can get you down. Last night for example I went out to a staff dinner party and ate the food they served one reason being I forgot to inform the wait staff and another I just don't want my co workers to know. A while after eating, about 1/2 hour later I got this tremendous headache and like muscle pain, down my legs and in my arms. This morning the muscle pain continues, I don't know how to describe it. Has anyone else ever experienced this. Is that possible after only a couple of weeks or am I just imagining the whole thing.

[Newgs]

Thank you. Don't understand I have to separate items. I keep my food in a separate cabinet.

[GlutenFreeManna]

Oh I was under the impression that a weak positive meant I could cut down on gluten products instead of eliminating them completely. I have eliminated most of it except for a couple of occassions where I completely forgot. It is proving to be time consuming, expensive and difficult to remember especially when cooking for the family. Its been a a couple weeks or so but I am becoming food phobic, fearing what I eat. It can get you down. Last night for example I went out to a staff dinner party and ate the food they served one reason being I forgot to inform the wait staff and another I just don't want my co workers to know. A while after eating, about 1/2 hour later I got this tremendous headache and like muscle pain, down my legs and in my arms. This morning the muscle pain continues, I don't know how to describe it. Has anyone else ever experienced this. Is that possible after only a couple of weeks or am I just imagining the whole thing.

Unless you plan to have more testing done in the future, you need to eliminate gluten completely. I'm surprised with your positive test results your doctors didn't tell you you have celiac. It's sort of like a pregancy test. The line may be a really faint positive, but it's positive all the same. You can't be a little bit pregnant and you can't have a "mild" case of gluten intolerance that allows you to keep eating low amounts. Actually, let me rephrase that, you may get away with eating small amounts of gluten symptom-wise for a few years, but eventually it will catch up to you in the form of other auto-immune diseases or additional illnesses such as cancer. You already have anemia and ostepenia. Those will not get better if you don't cut out gluten completely. You can make mistakes now and then and not mean to eat gluten but you should never do it on purpose if you want to get good health and remain in good health. What you are experiencing now with the muscle pain is a common neurological reaction. That pain was one of my main symptoms prior to going gluten free. I didn't get any bad gastro symptoms until after I cut out gluten and then got some accidentally. Depression is another neuro symptom associated with gluten intolerance/celiac.

[GlutenFreeManna]

Thank you. Don't understand I have to separate items. I keep my food in a separate cabinet.

You need to make sure that you are not sharing things that can become cross-contaminated (cc) by the gluten eaters in your home. For example if you have a jar of peanut butter and your SO spreads it on his/her toast every day then there will be crumbs in the peanut butter and they can make you sick. You should have your own butter, peanut butter, jelly, and other condiments that people dip gluten in. You also will want to get your own gluten free cutting board if your current one is wooden or plastic and has been used for bread or any gluten item in the past. Some other things to consider replacing--colander, scratched non-stick pans, plastic utensils with scratches in them, cast iron pans (may be able to reconditioned for gluten free only, but not wise to share with gluten eaters). Another thing to consider is where you prepare your gluten free food. Many people that have shared households designate a countertop or area as gluten free only. Or they restrict the gluten to just one countertop/area and are vigilent about cleaning that space often.

[Newgs]

I am finding out all of this information because I recently became employed a doctors office where I can get all the blood tests I need done for practically free. I am currently discussing my situation with the PA on staff, but she can get busy and I can't really bother her during work hours. It all started when I ran a CBC I was curious to see what my numbers were as I hadn't been to my hematologist for a long time. The PA noticed the anemia and so began a series of questions etc, when I told her about my dexa score she ran the test for celiac, but that was the gene test only, so when I posted here and was informed that just because you have the gene doesn't necessarily mean you have celiac or gluten sensitivity I went back to the lab and had them draw the tests for the antibodies, and came back with a weak positive. Haven't had the opportunity to speak with anyone yet, the PA is very busy and I do not want to bother her during work hours. I do not trust doctors, so I won't bring it up with anyone of the ones I work with. I actually have a phobia of doctors, too many years going to them with no results, ignored, midiagnosed, yelled at, laughed at. I can't even get on the phone to schedule an appointment with a doctor without experiencing extreme anxiety. Same with my son, now it is all making sense, we have spent years taking him to various dermatologists (he has vitiligo) with no success. I just googled vitiligo and gluten and discovered that there may be a connection. So I definitely have to get him tested, my other son has problems with taking hot showers, well they both do, the hot water makes them itch afterwards (like hives). He also is experiencing some form of gynecomastia, he was just sent to an endocronologist to evaluate his hormone levels. I used to have a problem with temperature change in the winter months, from the cold to room temperature I would break out in hives all over my body, no on ever could tell me why. I am sitting here overwhelmed at the enormity of it all, and thanking God that I got this job and was able to discover this problem and will inquire about having my sons' labs run.

[Newgs]

Thank you, what about appetite I couldn't eat at all yesterday, and today feels no better the muscle pain is better but appetite is not. I now know I shouldn't have eaten what I did, I am just uncomfortable about this whole situation, and not exactly sure on how to proceed when I go out etc. At home I have control but outside I just don't know. I am not currently depressed, I can get blue, and I do various times during the day, week, month, no telling why. But I have learned to deal with it, I know it will pass. I was hospitalized about 14 years ago with a major depressive episode and was on medication for a while, which did nothing but make me gain weight. Then I was hospitalized with pneumonia about 12 years ago, after discharge I made the decision to stop all psych meds all together, it was the hardest thing I ever did and I do not recommend it to anyone,it is not safe, but I made it through and it has gotten better, but that is a whole other story. I am glad that the pain is something that is temporary, and that it is directly associated with gluten I have spent years going to various orthopedists for severe back and bone pain and nothing, they never could tell me what it was. I have cried over this for years. You go to the doctor expecting to get some relief of pain or symptoms and you go home exactly the same if not worse, for now you have nowhere to turn. It can make you desperate. My husband says I have a high tolerance to pain, well of course I do, I have lived with pain for so long without a solution that when I have one lucky day without pain I am so happy so "normal". Thank you for your advice. I thought I was imagining the muscle pain. So many years of being told there is nothing wrong with you, you doubt every symptom, every ache, sniffle.

[Newgs]

Thank you for the information, do I have to be that vigilent, this is overwhelming to me I thought I could just separate what I eat in a different cabinet, I never thought about the butter, countertops, etc. What about if I put them in the dishwasher? This requires much vigilence I don't know if I can do it? I am busy all the time. I am a new nurse graduated 1 1/2 years ago, just found a wonderful job which led me to my diagnosis, I am currently working on my bsn am taking 18 credits, work 7-7 four days a week. I get up at 4:00 to cook dinner for my family before I go to work because after a day of being on my feet I have no energy to cook at 8:00 or so when I get in, I spend Friday getting my energy back and Saturday and Sunday cleaning and doing homework taking tests etc., to begin the week again. How can I do this? Last week I forgot to get my gluten free bread and could not have breakfast because I had nothing in the house I could eat, which led to me going to work I did not eat until almost 2:00 I had patients back to back. Aaagh!!!

[mushroom]

That is a very exhausting schedule you have set up for yourself, for sure. I hope that the time from 7-7 includes your class time too I also hope you have a crockpot/slow cooker - that can cut down your prep time quite a bit. Crockpots are ideal for gluten free meals and it is not even depriving your family because most whole unprocessed food is naturally gluten free anyway. Mixing things in the dishwasher should not be a problem with cross-contamination. Some families even take the whole house gluten free for eating at home (and it sounds like your children might benefit from this, perhaps??, once they are tested of course) and then the other family members can eat gluten ad lib when they are away from home if they don't need to be gluten free. But you do have to educate your family that you cannot be exposed to gluten, that it causes you pain, and it does damage to your body. At the moment you definitely do not have the time to be cooking separate meals for you and the family so you do need to have a family discussion about how to make this work without breaking your back .

[dreacakes]

Being freshly diagnosed is so confusing and difficult! I know I bumbled my way through the first few months of recovery, not really knowing what I was doing at first and having to seek out information to educate myself about my condition.

These is my basic how-to-heal-when-you-have-Celiac advice:

- As other people said, decontaminate the kitchen! My house is now gluten-free, and my non-gluten-free boyfriend can't eat gluten in the house, I got sick of being paranoid about the counters and dishes and I got sick of getting sick!

- Learn to read labels and understand all of the ingredients that can have gluten, or watch out for those things "processed on equipment shared with wheat". Also be sure your supplements, lip balm, and body care products are gluten-free. (that includes oats!)

- Go on a very simple diet in order to heal your gut. You may have other food intolerances because Celiac damages your intestines. Do an elimination diet and then go on a very simple gut-healing diet. Cut out sugar, caffine, alcohol, and eat whole live foods, lean meats, fruits, nuts, and veggies. Protein shakes with almond milk and dairy free protein power twice a day is also good. (as long as you don't have a nut allergy) I've also had success taking digestive enzymes between meals.

- Skip going out to eat for awhile. It's a bummer, I know, but getting glutened is sooo not worth it.

You might feel awful for awhile, as a lot of people go through withdrawal from gluten. Don't fret if this happens, it's totally normal, and it does get better eventually. Sadly, you may or may not receive accurate or useful information from the medical community, so it's best to do lots of your own research and above all, trust your own instincts about how you feel!

Much luck to you on your journey to health!

[Newgs]

Thank you all for your advice. I received the first of my son's test results.

My oldest came back with gliadin igg, abs at 38

gliadin iga, abs <20

My younger one gliadin igg, abs at 75

gliadin iga, abs at 83

So I guess that means they are reacting to gluten in their food, still waiting on the dna results they should be in next week. But have already put them on gluten free. I feel their sadness and anger, they are teenage boys so they eat alot and a vast variety of foods that they now are forbidden to eat, but it will get better, I have told them they can download apps to help them with their food choices, have explained to them that even though they do not have outward symptoms, their body is reacting to the gluten they eat or else it would not have shown up in the blood test.

I was also wondering has anyone ever experienced other symptoms once going gluten free. I have extreme itchy skin, not a rash or anything just itchy all the time, have started taking zyrtec for that. Also, I am more short of breath, it seems like almost anything makes my asthma react, not extreme or anything, just very short of breath, using my inhaler more often than before.

[mushroom]

I was also wondering has anyone ever experienced other symptoms once going gluten free. I have extreme itchy skin, not a rash or anything just itchy all the time, have started taking zyrtec for that. Also, I am more short of breath, it seems like almost anything makes my asthma react, not extreme or anything, just very short of breath, using my inhaler more often than before.

Oh yes, the itchies. One of mine was from soy, the other was from potatoes. It took me two years to figure out the potatoes because there was potato starch in all the flour mixes

[lynnelise]

Try to keep simple things on hand. Rice cakes and peanut butter got me through the first few months. I always carry Larabars and Kind bars in my purse for emergencies. I keep packs of tuna and plain almonds in my desk at work. There are a few microwavable Thai meals (Thai Kitchen and Taste of Thai)that are labeled gluten free. They are usually with the rice and/or the ethnic foods. These aren't the most nutritious but they can prevent you from missing a meal when you are in a hurry! Make snack bags of cut up veggies. Keep fresh fruit on hand! Use a crockpot for quick dinners!