Just had blood test and really want to start gluten-free right away

[Pinkee]

I have had symptoms for many years, interestingly they are mostly neurological. I was actually recently investigated for MS but the neurologist said there is no evidence of that, although there are a few 'nonspecific' brain lesions which I've read can actually be related to coeliac disease. I have had some GI symptoms and looking back they have become worse over time, but I just assumed it was normal or related to a gynae issue or secondary to the assumed neurological issues. Anyway, it's looking increasingly like coeliac and I was fortunate to have my Dr take me seriously and issue a blood test which was taken yesterday. I have been eating gluten up until 2 days ago. I actually stopped the day before the blood test (I wasn't expecting to get it done so fast as it was the same day as my appointment with the Dr but I'm glad it's been done). I hope that eating no gluten the day before won't affect the test? I do feel that things are very flared up at the moment either way. There was a period of about 2 weeks where I went gluten-free last December and I felt great, so everything is pointing towards coeliac. 

I know it is understood that during the diagnostic process one should continue to eat gluten as usual to get the diagnosis but I'm very concerned about how bad things are already. I feel it is very flared up currently, I have burning lower back pain, sort of a burning sensation inside too, and a lot of numbness and pain throughout my whole body including my face and tongue. If I need a biopsy and I knew it would happen very soon then I would continue to eat gluten but not being sure how long this will take I can't bear the thought of continuing to cause more damage when I've had this issue developing for many years. Symptoms began when I was 17 and I'm now 29 (female). To be honest I might have had it in childhood but much more mildly. 

[Scott Adams]

Welcome to the forum! It's doubtful that not eating any gluten for only 1-2 days before your test will affect your results by much. It's possible any antibodies measured will be very slightly lower, but if you have celiac disease, those levels should still be high enough to make a diagnosis.

It's also possible, of course, that you have non-celiac gluten sensitivity, and there currently isn't a test for that, although many of the health risks remain for those who continue eating gluten. Hopefully they will develop a test for this condition soon, as ~12% or more of the population may have this.

You have the final say over whether or not you want to do a biopsy. There are pros and cons to getting a formal diagnosis, for example, they may do follow up health tests if you are diagnosed that may not get done if you're not diagnosed. You also would likely pay higher private life (and possibly health) insurance premiums with a diagnosis.

Let us know how the test turns out. If gluten is the cause of your issues you should start to notice positive changes in your symptoms within weeks of going gluten-free, but full recovery could take months or years.

[Pinkee]

21 minutes ago, Scott Adams said:

Welcome to the forum! It's doubtful that not eating any gluten for only 1-2 days before your test will affect your results by much. It's possible any antibodies measured will be very slightly lower, but if you have celiac disease, those levels should still be high enough to make a diagnosis.

It's also possible, of course, that you have non-celiac gluten sensitivity, and there currently isn't a test for that, although many of the health risks remain for those who continue eating gluten. Hopefully they will develop a test for this condition soon, as ~12% or more of the population may have this.

You have the final say over whether or not you want to do a biopsy. There are pros and cons to getting a formal diagnosis, for example, they may do follow up health tests if you are diagnosed that may not get done if you're not diagnosed. You also would likely pay higher private life (and possibly health) insurance premiums with a diagnosis.

Let us know how the test turns out. If gluten is the cause of your issues you should start to notice positive changes in your symptoms within weeks of going gluten-free, but full recovery could take months or years.

Thank you for your detailed response. It's great to know about the possible pros and cons to an official diagnosis, and it's interesting to know that a gluten sensitivity is a possibility that would not show up on the current tests. It's also great to find this forum full of so many people's experiences with the condition. 

I would describe my symptoms as severe, and mostly pain-related. Within the past year, especially within the past few months, the neurological issues have become much worse. I know that celiac is a tough condition but I am relieved that I may have it, as it means that I can do something to help all the problems I've been having for such a long time. The thought that some of my symptoms could even go into remission is incredible, it's something that I never before thought was possible because of how bad they've been.

[Scott Adams]

Here are where our summaries of articles on neurological problems and CD can be found:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/ataxia-nerve-disease-neuropathy-brain-damage-and-celiac-disease/

[Pinkee]

Thank you for that Scott.

 

I know that the best advice is likely to continue eating gluten until diagnosed but I just want to stop now. As I said the symptoms are very bad I have burning and numbness everywhere. Surely if I have had celiac for over 12 years, the damage will be detectable (in a biopsy) for a long time even if I go gluten free? I just want to stop the damage now. 

[Kate333]

5 hours ago, Pinkee said:

There was a period of about 2 weeks where I went gluten-free last December and I felt great

 

Hi Pinkee.  I'm glad you don't have MS. 

If you don't mind my asking, which of your symptoms improved when you went gluten-free for 2 weeks last December?  I've had some neuro-like symptoms despite being gluten-free for over a year now.  But I think in my case they are due more so to chronic, bad anxiety than G exposure.  

BTW, many GI docs will recommend gluten-free diet based on blood test results alone.  And pls. don't be discouraged if G antibody blood levels are high!  They typically quickly decline on a strict gluten-free diet.    

Best of luck to you on your healing journey!

[Pinkee]

6 hours ago, Kate333 said:

Hi Pinkee.  I'm glad you don't have MS. 

If you don't mind my asking, which of your symptoms improved when you went gluten-free for 2 weeks last December?  I've had some neuro-like symptoms despite being gluten-free for over a year now.  But I think in my case they are due more so to chronic, bad anxiety than G exposure.  

BTW, many GI docs will recommend gluten-free diet based on blood test results alone.  And pls. don't be discouraged if G antibody blood levels are high!  They typically quickly decline on a strict gluten-free diet.    

Best of luck to you on your healing journey!

Thank you Kate.

Last December, what spurred me on to try gluten-free was the appearance of a mystery rash on both elbows. It wasn't very itchy but very red and raised and I've never suffered from rashes before. For years I've had a lot of pain, most of it was only in my right arm and shoulder but for a couple of years I've had tremendous pelvic pain too, involving the genitals which they assumed was gynaecological. 

After earing gluten free for only this short time I noticed that my bodily pain levels were much reduced and the rash disappeared too. I also noticed that I had a better appetite as for a while it had been decreasing. However, as I wasn't diagnosed and staying gluten-free was tricky, I started earing it again. Looking back I was feeling a bit unwell for some time (no energy, depressive, pain again) but it was in April that I became very very ill. Every day I was waking up with pins and needles in my hands, tingling in my tongue too, and feeling weak in my arms and legs. It got really crazy, I was twitching all over and couldn't think clearly, kept almost blacking out especially after standing up. The elbow rash was also back and looked worse. I think that when I went gluten-free I might have made my tolerance to gluten even lower so the reaction was getting bigger. However I'm so relieved that it's not MS as I was so convinced that it was, especially after they found something in my brain. 

After this illness I have a lot of numbness everywhere and quite bad pain too. I think I'm going to stick to gluten-free now I just can't bear the thought of this getting worse while waiting for a diagnosis.

What are your neurological symptoms? 

 

[GFinDC]

Hi Pinkee,

The rash on your elbows could be DH (dermatitis herpetiformis).  DH is a skin condition only people with celiac disease get.  It usually appears as a rash in a symmetrical pattern on the body, both elbows, both knees etc.

People with DH sometimes don't test positive on the endoscopy.  That could be because the antibodies are concentrated in the skin vs the gut.  The DH rash is usually very itchy and can cause small lesions/blisters.  A dermatologist can test for DH by taking  a tiny skin sample from next to a lesion, not on it.  They check the skin sample for IgA antibodies.

You mentioned a brain lesion?  There is a UBO (unidentified bright object) that people with gluten ataxia may show on a brain scan.  Gluten ataxia can cause them and also nerve problems.  B vitamins are helpful for nerve issues.

I suggest you not be surprised if your blood tests are negative.  Having negative blood tests does not mean you don't have celiac disease though.  Celiac is not easy to identify sometimes.