How To Cope While Waiting For Biopsy?

[Mum in Norway]

So.

After positive bloodtest I have to 'keep' eating gluten until i get a biopsy. Before the test I never ate much gluten at all, becaus, duh, it made me feel bad. Now I'm suposed to have gluten every day. Thats not agreeing with me very well, I'm so bloated people keep asking me if I'm pregnant (gets even less funny be the fact that I had a misscarige this spring...). I can not seem to focus on anything, not work or studies or my children or the horses or any other important thing in my life. I fall asleep all the time. At work, when I try to study, during meals, while singing to my toddler, even find it hart do stay awake for the 2 min drive from my house to work if i have had any gluten that day.

Also, I get dizzy. I work with diabled people, and they need me to be present! Not asleep or dizzy or un focused.

 

How did you cope with symptoms in everyday life before you were 'alowed' to go gluten free? Any advice?

 

As for why I even bother getting a propper diagnisis, there are two reasons. The first is my toddler, who has had some gluten issues when she was younger. We were told it had gone away when she stopped being ill from gluten, but i am not convinced... If i have a celiac diagnisis is it easyer to get the doc to ree test her.

The second reason is that in Norway, if you have a propper celiac deagnosis, you get financial suport every month 

from the govurnment becaus glutenfree food is more expensive than 'normal' food.

[freeme808]

Hi, 

I feel for you...Im going through the same thing. I was on and off prior to making my appointment...but have been consuming it everyday now. I had to wait a month(app. this Friday). It seemed like a year honestly... lol. But, this is just a consultation. I have no idea how long Im going to have to wait for the actual procedure. It's very hard....I had lost 12-15lbs when I went gluten-free for a month...well, when I started eating it again everyday...my weight shot back up within like a week. I literally look like Im 5 months pregnant, and after eating I bloat even more and look like Im 7 months. I hate it. Especially because it is summer time, and I don't want to put a bathing suit on. Very depressing. The other symptoms go on and on.

 

As for coping everyday...I just try to take one day at a time. That's all we can do. I know this diagnosis of knowing is just as important for you as it is to me. Just know, going through this for this small amount of time(although very hard), will be so worth it in the end...because you'll have your answer for the rest of your life...and that's a long time. After this last test, you can go gluten-free...no matter the results. And start to feel better. Like I said, just try to take one day at a time.

 

Hang in there! I know it's hard. 

HUGS 

[Serenity1366]

I am due to start my gluten feast next week  .  After eating gluten yesterday (by mistake) and still bloated with joint pain, I am wondering if I should start now for the test or not go back on gluten at all...something I will have to think about.

 

I think you are both very brave   I hope this will be it for you both, and as you say; you will have all your life gluten free and happy.  There is a light at the end of the tunnel .

 

Mum from Norway, if you had a positive test. Why do you have to have the biopsy?  I thought that if you have a positive blood test you do not need the biopsy, or is this still carried out to investigate damage to the small intestine?

[Mum in Norway]

Mum from Norway, if you had a positive test. Why do you have to have the biopsy?  I thought that if you have a positive blood test you do not need the biopsy, or is this still carried out to investigate damage to the small intestine?

 

I have to have the biopsy caus in norway, that is the only test that is considerd 'valid'. Also, only my DGP-IgG was positive, not the rest, so i 'have' to take the biopsy på be like 110% sure, not just 90-95%... The reason why I chose to do it is mostly becaus of my little girl, and also the financial support.

It is quite obvious that my body can not handle gluten, but if that is due to celiac, that changes alot, so i want to know for sure. Well, beginning to feel like i should just call off the whole ting, but I'll try manage.

 

Freeme, good luck to you!

And Serenity, I hope you can make a desition that you feel goo about

[powerofpositivethinking]

it seems like we're in the same boat    the only thing that was positive for me was the DGP-IgG too, and I am not IgA deficient.  My biopsy was negative, and I had 8 samples taken from the duodenum.  I wish the jejunum could have been explored since my GI said the damage could have been further down since the jejunum absorbs the fat soluble vitamins, and I am deficient in Vitamins D and K.  good luck, and let us know how it goes!

 

So.

After positive bloodtest I have to 'keep' eating gluten until i get a biopsy. Before the test I never ate much gluten at all, becaus, duh, it made me feel bad. Now I'm suposed to have gluten every day. Thats not agreeing with me very well, I'm so bloated people keep asking me if I'm pregnant (gets even less funny be the fact that I had a misscarige this spring...). I can not seem to focus on anything, not work or studies or my children or the horses or any other important thing in my life. I fall asleep all the time. At work, when I try to study, during meals, while singing to my toddler, even find it hart do stay awake for the 2 min drive from my house to work if i have had any gluten that day.

Also, I get dizzy. I work with diabled people, and they need me to be present! Not asleep or dizzy or un focused.

 

How did you cope with symptoms in everyday life before you were 'alowed' to go gluten free? Any advice?

 

As for why I even bother getting a propper diagnisis, there are two reasons. The first is my toddler, who has had some gluten issues when she was younger. We were told it had gone away when she stopped being ill from gluten, but i am not convinced... If i have a celiac diagnisis is it easyer to get the doc to ree test her.

The second reason is that in Norway, if you have a propper celiac deagnosis, you get financial suport every month 

from the govurnment becaus glutenfree food is more expensive than 'normal' food.

[umsami]

Have you experimented with different timing of your gluten foods?  Perhaps if you eat it at dinner, most of the symptoms will be gone by morning?   For me, the results are usually pretty quick.  I experience horrible diarrhea within 20-40 minutes after eating gluten...and it can go on for hours depending on what it was, how much, and just luck.

 

I'd also be asking the gastroenterologist to keep you in mind should any cancellations come up.

[greenbeanie]

Hang in there! I just finished a gluten challenge myself (and had my endo last Friday - waiting for results). It was a really awful six weeks, but it's SO nice when it's finally over. In those six weeks I got dozens of new grey hairs (and I'm only 37), then my hair started falling out in the shower every day, then my tongue swelled up, I couldn't remember anything from one minute to the next, and I was pretty much incapacitated by fatigue. That's in addition to the pregnant-like bloating and diarrhea, etc. Yuck! But I'm hoping it will be worth it if I can get a clear diagnosis. The good thing about the worsening symptoms was that once I finally got in to see the GI doctor, she saw my awful state and scheduled my endoscopy very quickly.

Taking care of a young child is especially difficult when you feel so awful. Do you have family and friends nearby who can help out? This would be a good time to rely on them as much as possible. It helped me to think of the gluten challenge as a significant illness that would end on a certain date. Trying to carry on as usual at home and at work was just impossible, and pretending everything was fine when I felt terrible only added to the stress. I ended up resigning myself to the fact that I was going to make mistakes at work, I couldn't give my daughter as much attention as she deserved, and I had no energy to do anything beyond the bare necessities. Other people really didn't understand how eating a couple pieces of bread every day could really knock me out of commission for so long, but oh well. Sometimes you just have to take care of yourself and do whatever you can to get through it. If that means sleeping for ten hours a day while the house is messy and the garden is full of weeds, so be it!

[BelleVie]

Greenbeanie, just curious, did you do a blood test at the end of your 6 weeks as well? Have you gotten the results, if so? I had some other blood work done recently that showed very high lymphocytes, which are associated with autoimmune disorders. I'm wondering if my inflammation was still high after 9 months gluten free, or if it was related to something else. My doctor is doing a biopsy at the end of July after a 5 week challenge, and he also insisted on the blood work. I was doubting it would come back positive, but since my allergic/inflammatory response is still apparently so high...maaaaybe it will? 

 

Hang in there! I just finished a gluten challenge myself (and had my endo last Friday - waiting for results). It was a really awful six weeks, but it's SO nice when it's finally over. In those six weeks I got dozens of new grey hairs (and I'm only 37), then my hair started falling out in the shower every day, then my tongue swelled up, I couldn't remember anything from one minute to the next, and I was pretty much incapacitated by fatigue. That's in addition to the pregnant-like bloating and diarrhea, etc. Yuck! But I'm hoping it will be worth it if I can get a clear diagnosis. The good thing about the worsening symptoms was that once I finally got in to see the GI doctor, she saw my awful state and scheduled my endoscopy very quickly.

Taking care of a young child is especially difficult when you feel so awful. Do you have family and friends nearby who can help out? This would be a good time to rely on them as much as possible. It helped me to think of the gluten challenge as a significant illness that would end on a certain date. Trying to carry on as usual at home and at work was just impossible, and pretending everything was fine when I felt terrible only added to the stress. I ended up resigning myself to the fact that I was going to make mistakes at work, I couldn't give my daughter as much attention as she deserved, and I had no energy to do anything beyond the bare necessities. Other people really didn't understand how eating a couple pieces of bread every day could really knock me out of commission for so long, but oh well. Sometimes you just have to take care of yourself and do whatever you can to get through it. If that means sleeping for ten hours a day while the house is messy and the garden is full of weeds, so be it!

[greenbeanie]

Greenbeanie, just curious, did you do a blood test at the end of your 6 weeks as well? Have you gotten the results, if so? I had some other blood work done recently that showed very high lymphocytes, which are associated with autoimmune disorders. I'm wondering if my inflammation was still high after 9 months gluten free, or if it was related to something else. My doctor is doing a biopsy at the end of July after a 5 week challenge, and he also insisted on the blood work. I was doubting it would come back positive, but since my allergic/inflammatory response is still apparently so high...maaaaybe it will? 

 

Yes, they did another round of blood tests. It was the same three that they'd done before (tTG-IgA and both DGP tests), and I got them to test me for IgA deficiency this time too. I don't have the results yet. I did have a CBC recently and my lymphocytes were normal, though my monocytes were somewhat high, as they have been for years. I also have anti-nuclear antibodies (titre 1:100, speckled), though the doctors don't seem to think it means anything. 

[Serenity1366]

I have to have the biopsy caus in norway, that is the only test that is considerd 'valid'. Also, only my DGP-IgG was positive, not the rest, so i 'have' to take the biopsy på be like 110% sure, not just 90-95%... The reason why I chose to do it is mostly becaus of my little girl, and also the financial support.

It is quite obvious that my body can not handle gluten, but if that is due to celiac, that changes alot, so i want to know for sure. Well, beginning to feel like i should just call off the whole ting, but I'll try manage.

 

Freeme, good luck to you!

And Serenity, I hope you can make a desition that you feel goo about

My thoughts are with you Mum in Norway. x

[Mum in Norway]

Have you experimented with different timing of your gluten foods?  Perhaps if you eat it at dinner, most of the symptoms will be gone by morning?   For me, the results are usually pretty quick.  I experience horrible diarrhea within 20-40 minutes after eating gluten...and it can go on for hours depending on what it was, how much, and just luck.

 

I'd also be asking the gastroenterologist to keep you in mind should any cancellations come up.

 

Yes, I have experimented with different timeing. The problem is that the symptoms start after about 2 hours, and last for about 48 hours. First the bloating and tierdness, then throwing up, feeling cold and dizzy, not being able to sleep, feeling druged when I try to get up in the morning- So I basicly can't have gluten if I'm going to work that- or the next day, or I have other responsibilities, like being alone with the children. Now I end up being gluten free most days, and thats not good for the biopsy. But when I have a date I will have to start eating alot of gluten the weeks before. Will most likely need to ask my doc for a sick leav from work...

[freeme808]

Me too, the timing thing. For me, it just sucks all around. If I cut back and only eat it one meal a day, the symptoms get more severe. Also, the lack of gluten also starts the withdrawal process...so I feel awful....then I eat it, and the symptoms feel worse. It's a lose, lose situation. So I decided to just eat it throughout the day...the symptoms stay at a constant level....but then the weight gain and bloating! Ugh!  I have to say, I TOTALLY feel for you Mum in Norway, cause at the moment, I'm not working...due to years of this crap. But, all I gotta say once again, is hang in there. If this testing is that important to you, I know you'll find the strength within to push through. I know I've had too, and let me tell ya, I seriously mean that I had to dig deep! So many times I wanted to give up...but, I felt Im already into deep...so I just stay here....waiting unhappy. Miserable. Tomorrow is my consult with the GI doc. Im being positive in that the doc can schedule me in soon for the procedures...like I mentioned before, no matter the outcome, I just know at the end of all of this I'll have a piece of mind. That's all I want. Good luck to you, once again....Pls hang in there girl. For your daughter, for you!!!!

 

<3 Freeme

 

Also, Greenbeanie, I've noticed within the last two months... my hair is just falling out! I also noticed with more severity this last year that Im getting more white hairs!!! Lots! Im only 24! My husband used to tell me that it was blonde hairs, but now there are so much more...lol, I've returned to highlighting my hair!

[Hopeful Healing]

I know these are older postings but I can relate to this!  I had a positive Celiac blood test and have to wait a month just to see a GI dr and then a biopsy after that!  I don't know how  much is psychological but it seems  I feel worse every day. The fatigue, brain fog, diarrhea, and inability to do daily activities is horrible !   I just can't wait to finally feel better  and wish I could start the gluten-free now:(

[CherylS]

I also realize that this is an old post.  My biopsy is January 8, my choice, I needed to wait for the new year because of my insurance.  I regret it and have considered calling off the biopsy so I can stop eating gluten to see if I feel better.  I feel like I really don't have celiac disease, maybe an allergy.  My celiac panel was negative, but I am positive for one of the genes.

I have chronic treatment resistant iron deficiency anemia and it's really taking a toll on me.  My weight is going up, although I don't feel I'm eating poorly. Today I did a little research and I learned that you can gain weight/ be unable to lose weight with iron deficiency anemia because your mitochondria don't get enough oxygen, which they need to function properly.

When I eat gluten, about 20-30 minutes later I get gassy and have to go to the bathroom, although it's not diarrhea.  I have a terrible itchy/burning rash that comes and goes, it's actually now getting better even though I'm eating gluten.  I try to only eat gluten once a day, maybe I'll eat it throughout the day to see if I feel better.

We went to Chicago for the weekend and I ate a lot of gluten.  I always have joint pain in my middle fingers.  After eating Chicago deep dish pizza, pasta, lots of bread, and pastries I woke up the next morning with all the joints in my hands hurting and my hands were weak.

I know I'll hold on until the biopsy, I realize that I need to have the EGD and biopsy because there could be something else going on that needs to be treated.  Either way, it will be nice to have answers.  No matter what is going on I plan on cutting gluten out of my diet to see if I feel better.

[jbg]

After 6mo of distended stomach, balance issues, foggy brain, bloating and constipation our 5yr old's doc agreed that there is a problem. We had a positive blood test come in and the doc has referred us to a GI specialist for the endoscopy.

What we cant seem to understand is why we would continue the behaviour of eating gluten if the end result after the invasive testing is to change the diet. Why wouldn’t a positive blood test lead directly to changing the diet? We are on a 2 month wait to see the specialist to schedule the procedure (another 2 months?) and the doc pled with us to keep the diet the same. The poor girl is in agony. If we change the diet and see improvement wouldn't this be considered a positive diagnosis?

Knowing the potential health risks of continuing a gluten diet with celiac disease I can not imagine this would be a problem, nor would I as a physician give this suggestion if it is causing damage. I don't have complete confidence in the medical industry here in the USA. Wondering how much of this is just paying salaries, not treating patients.

In the mean time we are potentially poising our little girl.

Any Help, opinions and debates are welcome!

[Toxic Glutension]

This is something I am really worried about too. When the doctors says "eat gluten".

I stopped intentionally eating gluten a year back, but contamination has been a problem. A double edged sword I think. All year I have been wanting to eat all the things I shouldn't, and now I am going to have to I am dreading it. What do I do? Lock myself in a room with a playstation, and wander around in the virtual world of Grand Theft Auto blowing up all the hot dog and doughnut stalls. While some kind but slightly afraid family member slides pizzas under the door??