gluten challenge and uk blood tests to request

[Gemak]

Hi everyone, I've found it such a help to read others experiences so I thought I'd please ask for advice on my own. In January I did a two week exclusion diet and started a food diary to try and figure out what was giving me such awful bloating, migranes, pretty constant nausea and sharp stomach pain shortly after eating, cramps as well as messy toilet trouble. I accidently ingested gluten during these two weeks so wouldn't say it was completely free as it was quite a learning curve - soy sauce for example, but noticed an improvement and the fog that I thought was baby brain lifted. After two weeks I started to eat gluten again to really be sure and it very quickly symptoms packed a punch worse than before. On day 9 of eating gluten again I did a home blood spot coeliac test (transglutaminase Iga) which was postive so I contacted my GP to request a blood test which I had four days later, before I got the test results I stupidly started a gluten free diet (because I was desperate to feel better and I was sure it would be positive, in the uk at the moment with the covid crisis doctors are diagnosing off blood tests). I started improving everyday, more so when I stopped handling our bread machine and used a different toaster from my family. Two weeks after the doctors blood test I finally recieved a phone appointment with my GP with my test results, to say my transglutaminase was 0.1 (normal range) and everything else was fine, I take multi vitamins every day and I hadn't eaten lots of gluten between the home test and blood test but I did make sure I ate a piece of toast in the morning. My GP suggested because I had two weeks off and almost two weeks on gluten that I could take a 6 week gluten challenge eating 10grams (which is a lot more than I'd often normally eat) of gluten a day and test again. My GP was completely unconvinced about the home blood spot test, she had never heard of them before and only agreed to test again because I get itchy skin after eating gluten. I'm now on day 11 of the gluten challenge and back living in stretchy leggings, all my symptoms are back along with an itchy spotty rash on arms and upper legs, having been gluten free recently I now realise that my chest pains (like someone punching my in the upper back) and my reliance on glasses to see clearly are all related to gluten. Everytime I eat something with a lot of gluten in it, a bagal for example, I feel like my head isn't attached to my body for a little while after, I'm wobbly on my legs, I can't think and often stammer words. My brain is so foggy, headachey and I'm tired, I'm having nightmares most nights and I'm often finding the mental toll of gluten harder than the physical to be honest. So I'm really confused by the results I've had and I'm really unsure if I should just take the GPs blood test as correct, that it's just a sensitivity and stop the gluten challenge. Or if I continue are there any other blood tests I can request from my GP rather than just the transglutaminase test because I really can't go through this again. 

[trents]

The TTG is the most specific of the blood tests for celiac disease but the least sensitive of the tests that can be done. We are hearing from a lot of people on the forum who are strongly symptomatic like you but get negative TTG values. Here is a link discussing the full battery of tests that can and should be done when serum testing for celiac disease, particularly if the TTG is negative: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

We are also hearing from a lot of people whose biopsies are negative but who get strong celiac-like symptoms when consuming gluten. You may have non celiac gluten sensitivity. But regardless of whether you have that or celiac disease, the antidote is the same: total avoidance of gluten.

[knitty kitty]

You could get the rash tested for dermatitis herpetiformis which only occurs with Celiac Disease.  If your rash is DH, then you have Celiac.  False negatives from improperly taken biopsy samples are possible.  

Or genetic testing can spot if you've got any of the most common, known genes for Celiac.  The caveat here is not all Celiac genes are known.  If you've got the genes for Celiac, and your reaction on and off gluten shows health changes, some doctors will say that's enough to make a Celiac diagnosis. 

Or call your doctor's office, say you're at your limit of consuming gluten and need another blood test listing the tests trents suggested.  The important thing is to get tested while your antibodies are high.  

Trents, since she was on then off and back on gluten and having one of those "worse than before" heightened immune responses, do you think her antibodies would be high enough for a positive result now?

[trents]

7 minutes ago, knitty kitty said:

Trents, since she was on then off and back on gluten and having one of those "worse than before" heightened immune responses, do you think her antibodies would be high enough for a positive result now?

I'm guessing a full celiac panel would reveal more information at her present state of gluten consumption and symptoms.

OP also needs to be aware that having the genes does not guarantee having active celiac disease. But given her symptoms . . .

Good suggestion about the skin biopsy for DH.

Edited March 5, 2021 by trents

[Gemak]

I have a phone appointment in ten days time and will ask my GP about more thorough screening and testing my rash I didn't know that was possible, I am nervous of having another blood test too early and possibly getting an incorrect result as I know my GP will refuse any further testing if it comes back negative again. Thank you for taking the time to reply it's really helpful information and makes me feel better as it's quite a lonely thing to experience. 

[knitty kitty]

You're not alone in this.  We've all been beginners at some point.  And it can be confusing and overwhelming, but we're here for you.  I'm so thankful for Scott's forum.

 

[cristiana]

Hi Gemak

I saw the words "UK" in your thread title so I thought I'd chime in as I live in England and so I've been through the UK testing process.

I had two tests done by my GP - the Iga and the TTG.  I remember being referred to a gastroenterologist and him telling me that the Iga was unconvincing but my TTG was over 100 (then, in 2013, UK readings cut off at 100 unfortunately, I'd have loved to have known just how high my readings were!)   So definitely worth having that TTG test.  Furthermore, my levels took a very long time to come down to normal (over two years), so in my own particular case I reckon even if I hadn't had that gluten challenge they would have still been very high.  That of course will not apply to everyone.  

A friend of mine was encouraged to have an endoscopy because she had coeliac symptoms and her blood tests were negative.  This can happen in a small number of cases.  So she self-referred and paid for the test.  In the end she wasn't a coeliac, but at least she now knows for sure now.  And do bear in mind that some people have non-celiac gluten sensitivity with very similar coeliac symptoms.  You can read about it here.

https://www.coeliac.org.uk/information-and-support/coeliac-disease/about-coeliac-disease/gluten-sensitivity/#:~:text=Non coeliac gluten sensitivity is,damage to the gut lining.

I hope you manage to get the TTG test.

Cristiana

 

 

[Keza]

Hi I’m new to this site hope it’s ok to message here I have had a blood test come back saying my celiac results were high that was about November last year for have a telephone consultation in may and I have changed to Guten free for the past two weeks my belly feels better does bloat anymore but I am still going about 4 time in the morning it’s just lose not watery so to go in detail but it’s like I have finished then half hour later need to go it’s like I didn’t finish going each to me when you did . Ok s this normal ?? 

[cristiana]

Hi Keza

It takes a while for symptoms to settle, so I'd say that what you are experiencing would not be unusual.  You may find it beneficial to cut out dairy at this early stage until your gut has healed properly.  I continued to get loose stools and bloating for some time until I gave up dairy.  I do consume dairy now but it can still upset me if I have too much.

Welcome to the forum!

Cristiana

[Keza]

39 minutes ago, cristiana said:

Hi Keza

It takes a while for symptoms to settle, so I'd say that what you are experiencing would not be unusual.  You may find it beneficial to cut out dairy at this early stage until your gut has healed properly.  I continued to get loose stools and bloating for some time until I gave up dairy.  I do consume dairy now but it can still upset me if I have too much.

Welcome to the forum!

Cristiana

Hi cristiana 

Thank you for responding just wanted to check 

keza xx

[trents]

10% of celiacs react to oat protein like they do gluten in wheat, barley and rye. So you might also  try eliminating oats for a time and see if there is improvement.

[Keza]

Thank you 

[Fireangel2u]

On 3/5/2021 at 6:50 AM, Gemak said:

Hi everyone, I've found it such a help to read others experiences so I thought I'd please ask for advice on my own. In January I did a two week exclusion diet and started a food diary to try and figure out what was giving me such awful bloating, migranes, pretty constant nausea and sharp stomach pain shortly after eating, cramps as well as messy toilet trouble. I accidently ingested gluten during these two weeks so wouldn't say it was completely free as it was quite a learning curve - soy sauce for example, but noticed an improvement and the fog that I thought was baby brain lifted. After two weeks I started to eat gluten again to really be sure and it very quickly symptoms packed a punch worse than before. On day 9 of eating gluten again I did a home blood spot coeliac test (transglutaminase Iga) which was postive so I contacted my GP to request a blood test which I had four days later, before I got the test results I stupidly started a gluten free diet (because I was desperate to feel better and I was sure it would be positive, in the uk at the moment with the covid crisis doctors are diagnosing off blood tests). I started improving everyday, more so when I stopped handling our bread machine and used a different toaster from my family. Two weeks after the doctors blood test I finally recieved a phone appointment with my GP with my test results, to say my transglutaminase was 0.1 (normal range) and everything else was fine, I take multi vitamins every day and I hadn't eaten lots of gluten between the home test and blood test but I did make sure I ate a piece of toast in the morning. My GP suggested because I had two weeks off and almost two weeks on gluten that I could take a 6 week gluten challenge eating 10grams (which is a lot more than I'd often normally eat) of gluten a day and test again. My GP was completely unconvinced about the home blood spot test, she had never heard of them before and only agreed to test again because I get itchy skin after eating gluten. I'm now on day 11 of the gluten challenge and back living in stretchy leggings, all my symptoms are back along with an itchy spotty rash on arms and upper legs, having been gluten free recently I now realise that my chest pains (like someone punching my in the upper back) and my reliance on glasses to see clearly are all related to gluten. Everytime I eat something with a lot of gluten in it, a bagal for example, I feel like my head isn't attached to my body for a little while after, I'm wobbly on my legs, I can't think and often stammer words. My brain is so foggy, headachey and I'm tired, I'm having nightmares most nights and I'm often finding the mental toll of gluten harder than the physical to be honest. So I'm really confused by the results I've had and I'm really unsure if I should just take the GPs blood test as correct, that it's just a sensitivity and stop the gluten challenge. Or if I continue are there any other blood tests I can request from my GP rather than just the transglutaminase test because I really can't go through this again. 

If you are not currently eating gluten any test taken to see if you have a problem with gluten is completely useless.  And the home spot tests yeah no those are a scam.  The only scratch tests that work are allergy tests done in a medical office. They won't tell you if your allergic to gulten.  They can tell you if you are allergic to wheat, soy , fish.  I am allergic to wheat and pork. Not all gluten.  The gastrointestinal doctor asked if I wanted to go off my diet to get a celiac disease diagnoses.  No thanks.  I will just keep my allergy.

[trents]

On 3/5/2021 at 3:50 AM, Gemak said:

Hi everyone, I've found it such a help to read others experiences so I thought I'd please ask for advice on my own. In January I did a two week exclusion diet and started a food diary to try and figure out what was giving me such awful bloating, migranes, pretty constant nausea and sharp stomach pain shortly after eating, cramps as well as messy toilet trouble. I accidently ingested gluten during these two weeks so wouldn't say it was completely free as it was quite a learning curve - soy sauce for example, but noticed an improvement and the fog that I thought was baby brain lifted. After two weeks I started to eat gluten again to really be sure and it very quickly symptoms packed a punch worse than before. On day 9 of eating gluten again I did a home blood spot coeliac test (transglutaminase Iga) which was postive so I contacted my GP to request a blood test which I had four days later, before I got the test results I stupidly started a gluten free diet (because I was desperate to feel better and I was sure it would be positive, in the uk at the moment with the covid crisis doctors are diagnosing off blood tests). I started improving everyday, more so when I stopped handling our bread machine and used a different toaster from my family. Two weeks after the doctors blood test I finally recieved a phone appointment with my GP with my test results, to say my transglutaminase was 0.1 (normal range) and everything else was fine, I take multi vitamins every day and I hadn't eaten lots of gluten between the home test and blood test but I did make sure I ate a piece of toast in the morning. My GP suggested because I had two weeks off and almost two weeks on gluten that I could take a 6 week gluten challenge eating 10grams (which is a lot more than I'd often normally eat) of gluten a day and test again. My GP was completely unconvinced about the home blood spot test, she had never heard of them before and only agreed to test again because I get itchy skin after eating gluten. I'm now on day 11 of the gluten challenge and back living in stretchy leggings, all my symptoms are back along with an itchy spotty rash on arms and upper legs, having been gluten free recently I now realise that my chest pains (like someone punching my in the upper back) and my reliance on glasses to see clearly are all related to gluten. Everytime I eat something with a lot of gluten in it, a bagal for example, I feel like my head isn't attached to my body for a little while after, I'm wobbly on my legs, I can't think and often stammer words. My brain is so foggy, headachey and I'm tired, I'm having nightmares most nights and I'm often finding the mental toll of gluten harder than the physical to be honest. So I'm really confused by the results I've had and I'm really unsure if I should just take the GPs blood test as correct, that it's just a sensitivity and stop the gluten challenge. Or if I continue are there any other blood tests I can request from my GP rather than just the transglutaminase test because I really can't go through this again. 

I think you have all the evidence you need from your symptoms to conclude that you are either have celiac disease or gluten sensitivity. Stop torturing yourself.

[Gemak]

Thank you for all of your replies and I hope you’re all keeping well. I phoned my doctor this morning to explain to her my symptoms and how I’m struggling. She told me that my mental symptoms were symptomatic of inflammation in my body and only I can say how long I can continue the gluten challenge, but she suggests as long as I possibly can. She also mentioned that even if my test was negative that she would probably put me forwards for an endoscopy because of my stomach symptoms so I have just gone ahead and booked the next available blood test anyway, which is in just over a weeks time. I’m not convinced that my mental symptoms are just down to my stomach being inflamed, I also think it’s possible that I’m perhaps low iron and/or other nutrients even though I take a multi vitamin as I’m constantly lightheaded and low energy but of course I may be wrong. I did say surely if I took the test now and it was celiac my TTG would show an increase even a small one but she just said for accuracy the guidelines are 6 weeks. My last TTg was so low I’m not convinced it will be different. Anyone with an experience of a four week gluten challenge on 10 grams a day? 

[trents]

The small amount of iron in a multivitamin will not have much impact on your iron levels if your are significantly anemic. Besides that, many with iron deficiency anemia are also low in B12 which is necessary for the absorption of iron. Some people have what's called "pernicious anemia" which is the lack of an enzyme called "intrinsic factor" which prevents the absorption of B12. At the very least, I would suggest adding in a high potency B-complex to your multivitamin. The B vitamins work together as a group so taking high doses of them all is the best approach. Now, if you are planning vitamin and mineral deficiency testing you might want to hold off on that.

[cristiana]

2 hours ago, Gemak said:

Thank you for all of your replies and I hope you’re all keeping well. I phoned my doctor this morning to explain to her my symptoms and how I’m struggling. She told me that my mental symptoms were symptomatic of inflammation in my body and only I can say how long I can continue the gluten challenge, but she suggests as long as I possibly can. She also mentioned that even if my test was negative that she would probably put me forwards for an endoscopy because of my stomach symptoms so I have just gone ahead and booked the next available blood test anyway, which is in just over a weeks time. I’m not convinced that my mental symptoms are just down to my stomach being inflamed, I also think it’s possible that I’m perhaps low iron and/or other nutrients even though I take a multi vitamin as I’m constantly lightheaded and low energy but of course I may be wrong. I did say surely if I took the test now and it was celiac my TTG would show an increase even a small one but she just said for accuracy the guidelines are 6 weeks. My last TTg was so low I’m not convinced it will be different. Anyone with an experience of a four week gluten challenge on 10 grams a day? 

Hello again Gemak

Around the time of the 2012 Olympics (I'm not an athlete, I just remember it was around then!) I started to suffer from debilitating anxiety.  I also started to get hallucinations on waking.  Long before that even I was beginning to think I was losing my memory as I went through long stretches of not being able to find the right words, and this became problematic because at that time I was doing quite a bit of public speaking.  One evening the audience were having to join in to help me find the right words - it was like a game of Articulate!  

Anyway, it was the anxiety that took me to the doctors.  She ordered a wide raft of blood tests.  It came back that I had skewed liver function tests and severe anemia.  For a while she wondered if I had melanoma but there was absolutely no reason to suspect coeliac disease.  A month later she repeated the blood tests and my liver function tests were normalising, and my anemia was responding to pretty high doses of ferritin. My B12 was borderline so she never advised supplementation but I took matters into my own hands and took Berocca.  Within a few weeks my anxiety levels improved greatly. 

About six months later (March 2013) I had gastritis and was prescribed omeprazole.  I got dreadful diarrhea and came off it.   However, the diarrhea would not let up.  I lost about three-quarters of a stone in just a few weeks.  People noticed.  I got dark circles around my eyes.  I looked pretty unwell.  By then another doctor was looking after me and because I'd had diarrhea for some weeks she tested me for coeliac disease.  I was so relieved when she told me that they had finally found out was wrong with me - I could have hugged her.  

The reason I'm telling you all of this is that I think in my own case I started to recover from the mental side of things because of supplementation, long before my actual diagnosis, and in fact long before the gastric symptoms manifested themselves, so I think a lot of it in my own case was to do with deficiencies.  I have found it is difficult in the UK to get tested for deficiencies but B12 and iron levels are exceptions and something that hopefully your doctor should agree to quite readily.  I am sorry if I have missed it and she is already offering it, but if you are not sure please request that they test you for these as well.

I am so sorry that the gluten challenge is proving so hard.  Mine wasn't too bad, but it brought on some pretty grim headaches. I am afraid I can't answer your question about 4 weeks on 10gs a day. Before my endoscopy I did 6 weeks with 2 slices of toast a day, but also I ate things I loved that I knew that would be forbidden foods post endoscopy, so the list included chocolate Penguin bars and Weetabix!

If you can get properly diagnosed in the UK there are some advantages.  You would get  follow ups with an NHS gastroenterologist and advice from a nutritionalist.   You would be sent for  bone density checks etc.  Also, it puts us in category 6 for covid jabs.  But I do understand for some people the gluten challenge is just too much.  I wish you all the very best.

 

 

 

[Gemak]

Thank you for your helpful replies. I’m usually very fit and I have two small children so I’ve found it quite frightening that my mind has been so affected, the slow speech and stuttering really frightened my husband, that along with the weight loss made him quite cross that I’m continuing but he’s slowly understanding. I’ve lowered the amount of gluten over the last two days as I think I was over doing it but I’m still managing to eat a bread product twice a day. I’m also taking it easier, I sat and played Lego all day yesterday with the kids, so I’m functioning and they start school again soon as lockdown is easing so that should help! I’m hopeful some supplements will at least help me perhaps have more energy through the rest of the challenge but I feel like I don’t know anything at the moment so I’m taking it a day at a time. Thank you for the info Christiana on the benefits of being properly diagnosed I wasn’t really aware of these. All the best.

[cristiana]

I'll be thinking of you, Gemak.  I too had young children at the time, it's not easy feeling like this when you have to look after the family.  Take things as easy as you can while you are doing the trial - easier said than done, I know.   My husband was travelling a lot at that stage of my life so I decided to make no secret of how bad I was feeling when people asked how I was (you know what it is like in the UK - we all say, "Fine", even when things are far from fine!) and I was really touched at how helpful and understanding people were.