Positive Blood Test- Gluten Free For 4 Months

[user001]

Hello Everyone! This is my first post!

 

Basically since i was in my early teens, i never had the amount of energy my friends had, i was always sleeping and my parents thought i was lazy. I always had stomach aches, but even as a young kid that was something i learned to live with, just plain sick all the time! When I was 17, the doctor ran a battery of tests and of course they all came back negative. The doctor said I had chronic fatigue syndrome. She sent me on my way with nothing to go on. In my early 20's I had aches and pains, i was always tired, the doctors started talking MS, or fibromyalgia. i was tested again for lyme disease. After awhile you learn to 'live with it', im sure alot of you know how that goes. Skip to a few years ago when i was 27, i had a bad cold and went to the clinic, the doctor ran a bunch of tests and a few of my proteins and iron came back low so the doctor basically yelled at me saying i need to take better care of myself and learn how to eat right. She sent me to a nutritionist. I didnt really understand all this, eggs and toast is a freaking balanced breakfast!!! I eat my freaking wheaties! She made no sense as far as i was concerned.

 

Last fall i went to my health center and talked to a doctor about getting tested again for lyme disease, i love the outdoors and have found ticks on me, so it was the only thing that made sense. She ran the same tests i had previously had and the levels were about the same, and of course no lyme disease. She referred me to a counselor and said that was probably the reason i was having such low energy and getting sick so often, because i was depressed. This sent me into a complete tailspin, i saw a doctor and they prescribed me some anti depressants. What a nightmare. I never felt right. Before they had a chance to take their full effect, i went off of them and decided to explore options of my own to make myself feel better. Along my journey i suggested to my boyfriend that we eat more plants, meats and less processed foods. I had been realizing that things like pasta made me have a sharp pain and kind of a burning in my intestines. Within a week and a half of a gluten free diet, i had SO MUCH ENERGY! I didnt even know what to do with myself. The headaches that i had almost daily disappeared, no more stomach issues for the first time in my life! It has been amazing. It was actually really funny because i started to notice strange little things, like when i had a scratch from my cat, it would heal super quick, like the next day! Instead of 3. Thankfully I have not had a cold or anything like that since being gluten-free, but I can imagine it wouldn't last 6-8 weeks like every other cold i've ever had!

 

So i went to the doc for a follow up and discussed the possibility of having celiac disease. My grandmother had an intolerance to gluten and my 23andme results suggest and increased risk. She ordered the test, but told me to eat gluten for a week. i was going to put the test off, but get my other blood work done. The test was automatically done and the results came back positive for celiac, without me eating gluten for 4 months.

 

Is this normal? I am concerned that there must be alot of damage from suffering with this disease for over 15 years. Has anyone had a similar experience? I see the gastroenterologist next week, i hear he works with celiac patients, so I am hopeful.

[RMJ]

After being gluten free for a year my DGP IgA test was still positive, although lower (all of the other tests had returned to normal range). In some people it can take quite a while for the antibody levels to come down to the normal range.

[kareng]

It can take a long time for the antibodies to go down. It is also possible you weren't completely gluten-free. Because you weren't doing the diet for Celiac, you may not have realized all the places you can find gluten - like soy sauce or taking a burger off of a bun and eating it.

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What is the half-life of antibodies in the blood serum?

tTG and DGP typically decline to half their initial value in 3-4 months once on a gluten-free diet, but there are variations between patients.

[nvsmom]

A positive test after 4 month gluten-free is not the most common thing, but it is far from unusual.  Some of us had very high levels that take a while to go down.  

 

Most are down to normal by one year gluten-free. If it is still abnormal in over a year, a slight elevation could be caused by thyroiditis, crohn's, colitis, diabetes, chronic liver disease, or infection, and you might want to consider if something else is keeping it high.... it could still be celiac disease though.

[user001]

I am really just glad that im feeling better, for the most part. I see the gastro doc next week and he was listed on the physicians on this website, and i read a few people saying he is a great doc for celiac patients. Luckily he was in network and really close by! i really hope it isn't crohns, that is another that i am at risk for. i didnt think it was that because my general health and well being improved just a week and a half after cutting out gluten from my diet. Unlike most other people, I didnt get a headache after cutting out gluten completely, in fact I STOPPED getting headaches everyday. we'll see what the doc says. Also, i have been eating soy sauce, but i thought it had read that the fermentation process on brands like kikoman reduces the gluten content to less than 20 PPM. I think i read that on this site!

[nvsmom]

I'm glad you are feeling better, and it's great that you did not get the withdrawal headache.  

 

... Also, i have been eating soy sauce, but i thought it had read that the fermentation process on brands like kikoman reduces the gluten content to less than 20 PPM. I think i read that on this site!

 

Soy sauce could be helping to keep your numbers high. I do not believe that fermentaion removes gluten. If a product starts out with gluten it will end up with gluten except in distillation (like in hard alcohols).

 

There are gluten-free soy sauces out there. I use Bragg soy sauce and it tastes like any other brand of soy sauce to us.  

 

I would switch soy sauce - better safe than sorry.

 

Take care.

[KayM]

Hello Everyone! This is my first post!

 

Basically since i was in my early teens, i never had the amount of energy my friends had, i was always sleeping and my parents thought i was lazy. I always had stomach aches, but even as a young kid that was something i learned to live with, just plain sick all the time! When I was 17, the doctor ran a battery of tests and of course they all came back negative. The doctor said I had chronic fatigue syndrome. She sent me on my way with nothing to go on. In my early 20's I had aches and pains, i was always tired, the doctors started talking MS, or fibromyalgia. i was tested again for lyme disease. After awhile you learn to 'live with it', im sure alot of you know how that goes. Skip to a few years ago when i was 27, i had a bad cold and went to the clinic, the doctor ran a bunch of tests and a few of my proteins and iron came back low so the doctor basically yelled at me saying i need to take better care of myself and learn how to eat right. She sent me to a nutritionist. I didnt really understand all this, eggs and toast is a freaking balanced breakfast!!! I eat my freaking wheaties! She made no sense as far as i was concerned.

 

Last fall i went to my health center and talked to a doctor about getting tested again for lyme disease, i love the outdoors and have found ticks on me, so it was the only thing that made sense. She ran the same tests i had previously had and the levels were about the same, and of course no lyme disease. She referred me to a counselor and said that was probably the reason i was having such low energy and getting sick so often, because i was depressed. This sent me into a complete tailspin, i saw a doctor and they prescribed me some anti depressants. What a nightmare. I never felt right. Before they had a chance to take their full effect, i went off of them and decided to explore options of my own to make myself feel better. Along my journey i suggested to my boyfriend that we eat more plants, meats and less processed foods. I had been realizing that things like pasta made me have a sharp pain and kind of a burning in my intestines. Within a week and a half of a gluten free diet, i had SO MUCH ENERGY! I didnt even know what to do with myself. The headaches that i had almost daily disappeared, no more stomach issues for the first time in my life! It has been amazing. It was actually really funny because i started to notice strange little things, like when i had a scratch from my cat, it would heal super quick, like the next day! Instead of 3. Thankfully I have not had a cold or anything like that since being gluten-free, but I can imagine it wouldn't last 6-8 weeks like every other cold i've ever had!

 

So i went to the doc for a follow up and discussed the possibility of having celiac disease. My grandmother had an intolerance to gluten and my 23andme results suggest and increased risk. She ordered the test, but told me to eat gluten for a week. i was going to put the test off, but get my other blood work done. The test was automatically done and the results came back positive for celiac, without me eating gluten for 4 months.

 

Is this normal? I am concerned that there must be alot of damage from suffering with this disease for over 15 years. Has anyone had a similar experience? I see the gastroenterologist next week, i hear he works with celiac patients, so I am hopeful.

Wow I am so encouraged reading your pos,t because it sounds so much like what I have been through. I was diagnosed with Chronic fatique and irrable bowel syndrom at a young age and have struggled my entire adult life with fatige body aches ect. Now I have been gluten free for a year and was told I cant test mabey I will have them do it anyway just to see. I am 43 years old I feel that I am better, but if I mess up the pain is awful then the other stuff joint pain foggy brain and sooo tired. Its a mess I just want to be able to have an answer. I have a feeling I probly have lots of damage. I have been unable to digest any dairy product for years. I dont know if it is normal but its good you got some answers.

[user001]

I see the gastro tomorrow! I would encourage you to go to doctor Kay, but as long as you understand gluten free till death, maybe you can heal and be fine.

 

I will never forget the monday after easter. I was very careful all weekend to not eat anything with gluten, and I am an avid cook so I know how things are cooked just by smell and appearance. I ate NOTHING with gluten in it. The next morning stomach problems. I was in class later that morning and I was just so tired, I could NOT keep my eyes open. I can only assume there was a bit of cross contamination, so apparently i am very sensitive. The fog tapered off after 2 days, but i am still in shock how sensitive i am.

[beth01]

 

I am not saying that you aren't a very sensitive Celiac, just wondering if you prepared all the food yourself?  I specifically didn't go to Easter dinner with my family since it had only been weeks since my diagnosis and while my family offered to make gluten free options, how am I to know that Aunt Sally didn't cut her lettuce on a cutting board she thought she cleaned because she wiped the crumbs off, or Uncle Johnny used a stick of butter on his buttered beans that he used to butter his bread, or did they sanitize their whole kitchen before hand? How can you tell that from the smell and appearance? I worked in a restaurant as a cook the last few years and I can't tell that unless I have made the meal myself.

[user001]

beth- I was assumming there was alot of cross contamination as you talked about. I helped prepare a few dishes and i am familiar with the way my family prepares certain dishes. They make the same things for easter, every easter and I have been the one on deck to make the entire meal for several years. Im pretty sure someone used the same spoon for scalloped potatoes and then used it in the sweet and sour carrotts. I thought that i would be ok if i just avoided the dishes that specifically had gluten in them, but its not enough   From now on, holiday meals with be BMOM (bring my own meal)

[beth01]

I am not saying you aren't a sensitive Celiac, I was just wondering how you can tell how foods are prepared by smell and appearance?  Did you prepare all the Easter meal yourself? 

I didn't go to Easter meal this year because I had just been diagnosed the week before.  My family offered to make gluten free menu items, I declined. How am I to know if Aunt Sally didn't cut her lettuce on a cutting board she used to cut her bread on that morning and thought that just wiping the board off would make it safe.  Crumbs are gone, problem solved. Did Uncle Johnny use a stick of butter in his beans that he used to butter his toast? Did they clean and sanitize every possible space in their kitchen to avoid cc? I worked in a restaurant as a line cook for the last two years  and I can't tell that just by smell and appearance.

[beth01]

Didn't mean to post that twice, I am having problems with my computer.  It disappeared and then I had to retype it. I didn't mean it to sound b%$@#y, I was just wondering.  I am scared poop-less of family get togethers

[beth01]

Or I have been thinking I just need a bigger house and have ALL functions at my house.  I can just cook and prepare all year round lol

[user001]

Ohhh Beth, me too. I chose to stop eating beef and pork nearly 10 years ago, after living with my grandmother for 3 years previously, she still offers me things like hot dogs everytime i go to her house, and it sure as sh*t isn't turkey! They barely follow sanitary rules of food preparation, that's why I have cooked dinners for the whole family so many times. They really don't seem to understand at all and alot of them just have the attitude of 'what's it going to hurt'.

[user001]

also scalloped potatoes do NOT need to be made with flour... no reason for it at all. I have made them plenty of times but just using heavy cream and cheese.

[beth01]

I lost my job as a Medical Lab Tech for missing too much work because of illness a few years ago and decided to work somewhere that was a little easier emotionally.  I got a job at a Creamery making yogurt and a job as a cook in a restaurant that I had worked at while I was going to school.  Two worst places for me.  Who can work with all that flour and different powders flying around?  LOL I was getting stomach aches from the restaurant and major skin rashes and brain  fog at the creamery ( even though they stated their yogurt is gluten-free, I call BS on that one). The world is a scary place for people like us.  I think I like the sound of being agoraphobic instead.  lol

I am going to stop hijacking the thread lol

[user001]

LOL I feel your pain. I have been sick for so many years. Right now I am an almost 30 year old college student and looking for summer work. I have pretty much ruled out anything in food service. My boyfriend told me the gluten free bakery was hiring, but come to find out, they also bake regular treats in the same building.. noppeeee