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Back On Gluten To Get Tested

ninec

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ninec Newbie
ninec
Posted

Hello All:

I'm a bit confused on the length of time a person needs to consume gluten before having a blood test to check for antibodies.

I had gone off gluten for 8 months and had great success. My acid reflux and constant burping went away. The swelling in my face and fingers when away. Joint pain disappeared....and sorry for this, but the sudden (and I really mean SUDDEN!) bouts of diarrhea have ceased.

Because I felt so good I thought I'd give the stuffing at Christmas dinner a go. I was fine afterwards. I ate some shortbread cookies and even had a piece of cake over the holidays. (I was really pushing the limits!) The cake made me sooo ill. I went to bed and my joints were sore the next day. I stopped eating gluten again, but thinking that I screwed up my 8 month streak over Christmas, I lapsed and had a couple chocolate chip cookies. I felt like my chest was a little heavy (weasing a bit) after eating them and the next morning my eyes were puffed with fluid and my hands were swollen. My raspiness was back in my voice and my neck felt like there was pressure on it (like something was wrong with my esophagus) I had bouts with my throat for a while before going gluten-free where my voice is really raspy in the morning and I can no longer raise my voice. After going gluten free the pressure sensation (couldn't stand wearing a scarf or turtleneck) went away.

I waited 3 weeks and ate a couple of those cookies again to see if the same thing happened. Sure enough it did - exact same symptoms. I asked my doctor for a wheat allergy test and she agreed and has added celiac blood test as well. She advised I would have to eat gluten for a few weeks so the test would be accurate.

This is HELL! I have only been eating gluten for a few days now (2 slices of pizza and 2 bagels). I had a hamburger from Wendy's (where I usually get it without the bun and I'm fine) and my face turned bright red and hot (something that used to happen to me after eating certain foods in the past, such as creamy caesar dressing, some french fries, etc.

The burping, nausea and acid reflux have returned and my joints are so sore. My left knee and hip hurt the worst - (funny because my LEFT eye swells more than my right when I have a reaction)

Would it really take months for me to develop antibodies? (like what others have said on this board) Or wouldn't my cells remember this invader and make them more quickly? I'm wondering how "memory" cells work...and if this has any relation to antibodies. I really don't think I can go two months. I know I'm gluten intolerant, but I really wanted to be formally tested so I could benefit from the income tax claim that can be made for gluten free products.

Also, does anyone have any experiences where certain gluten products give different side-effects? Like how hamburger buns or caesar salad will cause my face to turn bright red and hot, while others will cause my throat to swell and fluid build-up in my face and hands?

Would it benefit me to eat cookies the night before going for my blood work?

Sorry, this post is so long. It feels very therapeudic to talk about this with others that might know what I'm going through!

Best regards,

~C~

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ravenwoodglass Mentor
ravenwoodglass
Posted

First off I am going to address the tax issue. You can only deduct the difference between gluten free and regular foods not the full cost of the gluten free foods. This requires not only keeping all reciepts but also noteing the price of the wheat versions for each purchase. That is a lot of record keeping. Also the amount that can be deducted for medical expenses is only the amount over 7.5% of your income. Many of us find that because we are much healthier gluten free we are not able to take advantage of the tax deduction even if we do all the record keeping.

Now as to the tests, even on a full gluten diet you still have a chance of a false negative. And yes you do have to redamage yourself for 2 to 3 months for a good chance of an accurate test. Some have knowledgeable doctors that will diagnose based on your reaction to the challenge. You will have to talk to your doctor about that.

The choice of whether the 2 to 3 month challenge with a possiblity of still having a false negative test is worth the pain is up to you.

mushroom Proficient
mushroom
Posted

Hello, and welcome to the forum.

The generally recommended time period for gluten consumption prior to challenge testing is two to three months, with a gluten equivalent of three to four slices of bread a day. For those who are truly intolerant, this is a form of torture that only the medievalists could devise :o And most of these people find that it is just not doable. People who have done the challenge for a lesser period have usually tested negative. Certainly, you will be making antibodies in your body, but they don't seem to immediately go to your bloodstream, in sufficient quantity, and it takes a lot of gluten to damage the small intestine sufficiently for a positive biopsy. And no, a packet of chocolate chip cookies the night before will not do it :rolleyes: There is also the possibility after all this torture for two to three months that you will test negative, that you are a non-celiac gluten intolerant, and then you will have suffered for nought. I know all of this is not what you wanted to hear, but it is nevertheless all in the cards.

I am not sure where you live, possibly Canada if you are thinking of the tax benefits of the diagnosis, but we had one poster recently that said that the receipt-keeping and hoop-jumping documentation were really not worth it. :rolleyes:

Perhaps others will have some more encouraging words for you, but if it were me, I would not do it. :unsure:

ninec Newbie
ninec
Posted
  • Author

Thank you both for your fast replies!

Darnit! Well, I'm just going to muddle through the 3 weeks, with the risk of coming up negative. I won't be able to last a couple months. If anything this ordeal is a painful reminder of what I used to feel like and will keep me from slipping up in the future.

Thanks again for your support.

~C~

p.s. You're right, a few dollars in tax deductions is not worth it, but really wasn't my main reason for doing the test. I am just hopeful that I will finally be diagnosed with something/anything that can explain why I've been so sick over the years.

ravenwoodglass Mentor
ravenwoodglass
Posted

Thank you both for your fast replies!

Darnit! Well, I'm just going to muddle through the 3 weeks, with the risk of coming up negative. I won't be able to last a couple months. If anything this ordeal is a painful reminder of what I used to feel like and will keep me from slipping up in the future.

Thanks again for your support.

~C~

p.s. You're right, a few dollars in tax deductions is not worth it, but really wasn't my main reason for doing the test. I am just hopeful that I will finally be diagnosed with something/anything that can explain why I've been so sick over the years.

I hope the time goes by quickly for you. Whether the tests show anything or not your body really has already give you the 'diagnosis'.

Keela Newbie
Keela
Posted

I was 99% gluten free for 2 years and then did a six month gluten challenge eating 2 slices of bread a day. My results were negative, but my symptoms all went away with in a month after going back gluten free. Earning me a 'non celiac gluten intolerant' diagnosis.

My doctor suggested I did not eat enough gluten, but I could not eat any more... I tried but I couldn't function eating more than 2 slices. I think it depends on your individual metabolism. What may not have been enough for me could be plenty for you. I hope you can get the diagnosis you want!

ninec Newbie
ninec
Posted
  • Author

Thanks Keela! I hope the test comes back positive for me...a little validation will go a long way for my esteem in all of this.

Speaking of esteem, on top of the bloating, nausea, and aches, I can't wait to get my eyes back again. I hate to admit my vanity, but my puffy eyes/face bothers me the most. I look like I've gained 10 pounds overnight and aged by 10 years!

Cheers All,

~C~

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kylie123 Newbie
kylie123
Posted

I have read that there is somewhat of a difference between a gluten allergy and a gluten intolerance. It sounds like you have an allergy... but I do not know much about this as I do not have and allergy, but might have an intolerance. I really hope you get better soon x

ninec Newbie
ninec
Posted
  • Author

Just a quick update:

I went for my blood test yesterday (Friday, Feb 04). For both, Celiac and Wheat antibodies tests it cost $145 CAD.

I was really hoping to make it through at least three weeks before getting tested, but I just couldn't do it.

I'll post my results when I get them.

Cheers!

ravenwoodglass Mentor
ravenwoodglass
Posted

Just a quick update:

I went for my blood test yesterday (Friday, Feb 04). For both, Celiac and Wheat antibodies tests it cost $145 CAD.

I was really hoping to make it through at least three weeks before getting tested, but I just couldn't do it.

I'll post my results when I get them.

Cheers!

I hope the tests have some conclusive results for you, although I always hate to say I hope someone's tests are postive. It sounds like your body is telling you that it doesn't want you to consume gluten. You felt better on the diet and saw symptoms return on gluten. You have a good chance of a false negative on testing since you had been gluten free for so long and weren't able to complete even a full three weeks on the challenge.

cahill Collaborator
cahill
Posted

Just a quick update:

I went for my blood test yesterday (Friday, Feb 04). For both, Celiac and Wheat antibodies tests it cost $145 CAD.

I was really hoping to make it through at least three weeks before getting tested, but I just couldn't do it.

I'll post my results when I get them.

Cheers!

Wither or not the test gives you a definitive answer your body already has. They couldn't get me to do a gluten challenge.No way!!!!!!!!

Much health to you

hanumandrea Newbie
hanumandrea
Posted

Hello,

glad to find someone with the same dilemma Im in... I have only been gluten free for 6 weeks but my eczema has disappeared and my digestion is improving. I have considered different reasons to get a formal diagnosis. For one, I would be able to give a name to my various health challenges. Second, and more important, I think I would have more support from my doctor as I go through the journey of recovery. Among the symptoms I have heard of, are yeast infections, fatigue, brain fog, and ataxia. Yikes. So my question is, does the risk of complications outweigh the pain of re-damaging ones digestive tract? Certainly, the longer I wait, the longer it will take for my body to produce wheat antibodies again. But I am so eager to feel better that I almost dont care. ???

  • 1 month later...
ninec Newbie
ninec
Posted
  • Author

....well, I called for my results today. I was tested for Celiac antibodies and Gluten antibodies.

I was told that my results were negative (**sigh**). Something along the lines of just "below" 0.35 and the other test with a measurement of 12 being positive and I was at a 2 and 3.

I have stopped eating gluten now for approximately a month. Still feeling the effects though, but a huge improvement in my throat, reflux, and still a bit of joint pain. I still have swelling and "bathroom" issues, but I remember it took some time before that sorted out for me the first time I went off gluten....not burping as much either!! Yay for that!!

Thanks again for all of your support....and thanks for this fantastic forum of shared experiences. :)

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