Gluten Intolerance/kidney Pain

[sorekidney]

Hi, I am completely new to this forum and just wanted to post to see what you all think of my symptoms and whether or not they could be gluten intolerance? Incidentally, I have not been tested by a Dr for it but was tested by a Holistic Practitioner several years ago (this has been going on now for ten years) and he said I was fine to eat gluten/wheat. However, he also tested my daughter around two/three years ago and her test revealed she is gluten intolerant. I wonder if my position has changed and maybe I would now get a different result. My symptoms are crippling kidney pain brought on by sitting with my back against anything for more than a few minutes, particularly in a car/bus etc, presumably the mild virbration through the chair back makes it worse. I am overseas at present, in a hot climate, and can't sit outside in the sun because of the kidney pain against the sun lounger, at night I often can't get comfortable on the sofa and have to resort to lying on it to watch TV (gosh, I sound lazy, I'm not really!). The pain in my kidney (left side only) used to be relieved by eating and this relief was quite rapid. Nowadays, eating usually still works, not always, but it takes longer and the episodes of pain, where they used to be occasional are now daily. I have had a couple of episodes of adrenal exhaustion, one resulted in hyperthyroid episode, which Holisitic P sorted with herbal supplements although Consultant at hospital wanted me on drugs because I had tested positive for autoimmune thyroid disorder, since being treated by HP though all blood tests have come back within the normal limits. Am I right in thinking that autoimmune thyroid/adrenal problems can be associated with gluten intolerance? I don't know if I am barking up the wrong tree here, but, as of tomorrow I am going gluten free to see what happens, am in the process of making a non gluten free birthday cake for my husband and don't know if I'll be able to resist a slice before making this dietary change, which is why I am saying tomorrow :-) Any comments would be really appreciated. Thank you. BTW have had ultrasound scan of kidney, normal & urine analysis also normal, no blood tests though especially for gluten sensitivity.

[sorekidney]

The cake looks dreadful, so will go gluten free from today!

[notme]

i think you should see a doctor.  if you think you want to be tested for celiac, do NOT go off gluten until you have completed all tests.  you will not produce any antibodies if you are gluten-free before testing <something i wish my doctor had told me!  my dx would have been much easier if my blood testing was positive.  also, if not for any other reason to see a doctor:  thyroid is nothing to fool with.  and it needs to be managed or it will mess up other things (i don't have this, so i can't offer any specific advice, but many on here do)

 

sorry about your cake!!  

[sorekidney]

i think you should see a doctor.  if you think you want to be tested for celiac, do NOT go off gluten until you have completed all tests.  you will not produce any antibodies if you are gluten-free before testing <something i wish my doctor had told me!  my dx would have been much easier if my blood testing was positive.  also, if not for any other reason to see a doctor:  thyroid is nothing to fool with.  and it needs to be managed or it will mess up other things (i don't have this, so i can't offer any specific advice, but many on here do)

 

sorry about your cake!!  

Hi and thanks so much for your reply. I am in the Middle East with my husband for the next three months (his job has taken us out here) so I want to wait to see my Doctor when I get back. For that reason I think I will come off gluten until July and then maybe go back on it for a while when I get home before going to see him. My thyroid is fine now and all the blood tests I have had with my Dr show all is well :-) Fortunately for my husband (and unfortunately for me because I succumbed to temptation) the cake did turn out OK!! Gluten free from today and really hoping it's the answer and will finally get rid of my kidney pain. I hope you are now well and in good health and thank you again for replying.

[GottaSki]

Welcome SoreK!

 

I have to second NotMe.  When a person removes gluten prior to proper celiac testing they are often left in diagnostic limbo.  Gluten challenges are often very frustrating and there is no data as good as the celiac antibodies and/or biopsies prior to gluten removal.  

 

You don't need to overdo the gluten consumption....a slice of glutenous bread each day will assure you get the most accurate results when you return in three months.

 

Take a look through our pre-diagnosis section....I think if you take the time to read of the frustration people face because they removed gluten prior to testing, you may reconsider your choice.

 

Perhaps you can find a way to have Celiac antibody tests done where you are.  If not, three months is the length of a gluten challenge...consider this your challenge period and wait to remove gluten.

 

Hang in there

[sorekidney]

Welcome SoreK!

 

I have to second NotMe.  When a person removes gluten prior to proper celiac testing they are often left in diagnostic limbo.  Gluten challenges are often very frustrating and there is no data as good as the celiac antibodies and/or biopsies prior to gluten removal.  

 

You don't need to overdo the gluten consumption....a slice of glutenous bread each day will assure you get the most accurate results when you return in three months.

 

Take a look through our pre-diagnosis section....I think if you take the time to read of the frustration people face because they removed gluten prior to testing, you may reconsider your choice.

 

Perhaps you can find a way to have Celiac antibody tests done where you are.  If not, three months is the length of a gluten challenge...consider this your challenge period and wait to remove gluten.

 

Hang in there

Hi Lisa

 

Thanks for taking the trouble to comment and sorry I have taken this long to reply! I will have a look at your pre-diagnosis section and have a think about what I want to do.

 

My feeling at the moment is to wait until I get back to the UK to see a Doctor, but I might revise that.......

 

I am so reluctant to start eating gluten again, because even after three days I feel better! My kidney pain is massively reduced, still there but far less frequent and less painful and today I managed to sit outside for an hour-ish before it started to hurt and even then it was only a little and I didn't have to rush to eat in an effort to subdue the pain when I came back in and managed to hang the washing out before having to eat lunch. Not very exciting I know, but it feels like such a relief that I might finally be on the right track.

 

I don't want to sound ungrateful or stubborn (I am stubborn BTW :-)) and I will read the pre-diagnosis section and might well start eating a slice of bread a day as you suggest, just don't want to revisit the kidney pain anytime soon.

 

Sue

[GottaSki]

 

 

I don't want to sound ungrateful or stubborn (I am stubborn BTW :-)) and I will read the pre-diagnosis section and might well start eating a slice of bread a day as you suggest, just don't want to revisit the kidney pain anytime soon.

 

Sue

 

You sound neither ungrateful nor stubborn.  Sounds like you are in a tough spot.  If eating gluten is causing the pain you describe, you need to get to a doctor.

 

Never make a decision based solely on advice found in an online discussion.

 

Good luck to you

[Jmg]

Hi Lisa

 

Thanks for taking the trouble to comment and sorry I have taken this long to reply! I will have a look at your pre-diagnosis section and have a think about what I want to do.

 

My feeling at the moment is to wait until I get back to the UK to see a Doctor, but I might revise that.......

 

I am so reluctant to start eating gluten again, because even after three days I feel better! My kidney pain is massively reduced, still there but far less frequent and less painful and today I managed to sit outside for an hour-ish before it started to hurt and even then it was only a little and I didn't have to rush to eat in an effort to subdue the pain when I came back in and managed to hang the washing out before having to eat lunch. Not very exciting I know, but it feels like such a relief that I might finally be on the right track.

 

I don't want to sound ungrateful or stubborn (I am stubborn BTW :-)) and I will read the pre-diagnosis section and might well start eating a slice of bread a day as you suggest, just don't want to revisit the kidney pain anytime soon.

 

Sue

Sue, I cut gluten out and then found when I reintroduced it the effects were much worse than before. Just 6 days back on gluten pre a blood test left me feeling awful. The test was negative, Iwish I could go back and have had the test before I cut the gluten out. 

[sorekidney]

You sound neither ungrateful nor stubborn.  Sounds like you are in a tough spot.  If eating gluten is causing the pain you describe, you need to get to a doctor.

 

Never make a decision based solely on advice found in an online discussion.

 

Good luck to you

Thank you. I will go and see a Doctor, either out here or in the UK and I will make sure I am fully glutened before going! Haven't looked at the pre-diagnosis section yet, but intend sitting down to read it tomorrow, thanks so much for your kindness. 

[sorekidney]

Sue, I cut gluten out and then found when I reintroduced it the effects were much worse than before. Just 6 days back on gluten pre a blood test left me feeling awful. The test was negative, Iwish I could go back and have had the test before I cut the gluten out. 

Maybe I should eat one slice of bread a day then.......sorry to hear you felt so awful and all for nothing in terms of the test result. You've since been diagnosed as Celiac sufferer, does that mean you stuck to eating gluten after the negative blood test until you were diagnosed correctly?

[sorekidney]

Sue, I cut gluten out and then found when I reintroduced it the effects were much worse than before. Just 6 days back on gluten pre a blood test left me feeling awful. The test was negative, Iwish I could go back and have had the test before I cut the gluten out. 

Whoops, sorry Jmg, I confused you with GottaSki and have since read your posts on your page. I too am very sceptical about the medical/pharma community and am in two minds, as is possibly evident when reading between the lines, about going the medical route or staying self diagnosed. I suppose the only possible problem with self-diagnosis, for weak willed people like me anyway, is the ease with which you can 'fall off the wagon' if you aren't 100% sure you're doing the right thing. All I can say at this stage is that my kidney pain is so much better even after three days of being gluten free. I will eventually go and see a Doctor though if only to help keep me on the right road (assuming of course the diagnosis is positive, if not then I will hopefully manage to keep on the right road regardless, who wants to go back to being in pain a lot of the time).

[GottaSki]

Maybe I should eat one slice of bread a day then.......sorry to hear you felt so awful and all for nothing in terms of the test result. You've since been diagnosed as Celiac sufferer, does that mean you stuck to eating gluten after the negative blood test until you were diagnosed correctly?

 

Just a little aside....those of us whom are diagnosed with celiac no longer suffer, because a multitude of symptoms are resolved as long as we live gluten-free. 

 

Thought I'd let you know...in case you have Celiac or Non-Celiac Gluten Sensitivity - once the transition to gluten free living is made, life is very good.

[sorekidney]

Just a little aside....those of us whom are diagnosed with celiac no longer suffer, because a multitude of symptoms are resolved as long as we live gluten-free. 

 

Thought I'd let you know...in case you have Celiac or Non-Celiac Gluten Sensitivity - once the transition to gluten free living is made, life is very good.

Thank you! I'm beginning to wonder whether my rosacea is also connected as it seems calmer too, perhaps I am getting a little carried away!

[sorekidney]

Back again! Have been entirely gluten free since the 11th of April and after a couple of days my kidney pain disappeared (after 10 years!) and naturally I thought removing gluten from my diet was therefore the answer. I am still bloating regardless of what I eat and often look as though I am expecting after a meal (and I don't eat giant portions)......the reason why I am back on here today is because this morning I had fruit yogurt for breakfast with some seeds and nuts mixed in, I then went to sit outside for a while and found my old problem was back, I couldn't sit with my back against the chair because of kidney pain, it is still with me now, three hours after eating the yogurt and I feel just a tiny bit sick. So now I am wondering whether it is gluten, or dairy, or gluten and dairy......so reluctant to go and see a Doctor, in my experience they are pretty hopeless. My Dr in the UK ordered an ultrasound scan of my kidney and when it and my urine tests came back as normal, she just shrugged her shoulders and told me to take pain killers, when I told her pain killers made no difference to the pain and that sometimes the pain was so bad it made me feel sick/faint, she just shrugged her shoulders again and that was it, consultation over. Any comments would be appreciated and I think I will go and see a Doctor, just not my usual one for obvious reasons, if only to see if I can get to the bottom of this. I don't do drugs but if I can change my diet and finally get rid of this I will be so pleased and relieved. I suppose I do need a proper diagnosis so that I can confidently set out on the right road.

[sorekidney]

Oh and does anyone know if dairy intolerance can cause kidney pain? Apparently, according to the ultrasound, I do not have any stones, the person who did my scan said it was possible that I had tiny fragments which she maybe couldn't see.......given that it's been going on for 10 years, I don't think it can be that.....it's been suggested to me that it might be a trapped nerve or a muscle problem, strangely it started when I started training to become a Pilates Instructor and doing lots of Pilates myself, however, whether I am exercising or not nowadays, it doesn't seem to make any difference and the idea that Pilates could be causing it does seem a bit crazy, especially as my Holistic guy has consistently told me through his tests over many years that my kidney is showing as stressed. Am rambling on, so will go and eat some gluten free bread in the hope it will kill off the kidney pain, which is often eased by eating, more proof I suppose that it is not muscular!

 

Relevant (?) history: migraines, severe cause vomiting, although haven't had one for years; headaches; tiredness; anemia (only tested and diagnosed once); extreme kidney pain; adrenal exhaustion/hyperthyroid (now resolved); rosacea.