Really fed up, and need some help

[poorlypup87]

Hi,

I'm looking for some advice regarding coeliac disease and diagnosis. I have been really ill since February this year, although symptoms started around three years ago during my third pregnancy and I just don't seem to be getting anywhere as every doctor I see seems convinced that stress is causing all of my symptoms. I apologise if this is quite a long post!

It wasn't until last week that something sort of clicked for me and has made me wonder if I either have coeliac disease or a gluten intolerance as I seem to get ill when I eat certain foods. I have had various blood tests and had one for Coeliac back in August (i'm not sure which one it was) and it came back negative.  I think this why I am maybe doubting myself.

It started with terrible night time attacks 3 years ago, where I would get awful upper stomach cramps radiating to my back, fever, shakes, sickness and lose bowels. These would come on every few weeks and last about half an hour each time. A doctor diagnosed me with acid reflux and that was that. However, after the birth of my third child things have progressively got worse. I have been experiencing pain in my lower left abdomen (it is always there), tender stomach below the ribs mostly on the right side and bloating in the upper and lower abdomen. The pain in my lower left side can either be a dull ache that radiates to the hip and thigh or a sharp stitch like pain, that causes sciatica in my left leg. Over the last 6 months I have developed muscle and joint pain, mostly in the left side of my body, chronic headaches, Itchy skin and tingling fingers. I have constant flare ups of thrush in my mouth and ear and throat pain. I seem to get night sweats randomly too and calf muscle pain to the point where I can't get comfortable at night. Lose bowels with mucus are usual for me with some constipation in between. There are also times where I need to stay near a toilet because of cramps and diarreah. I also get problems with my bladder and have had kidney and bladder scans because of blood in my urine and showing all signs of water infections but not actually having one. They have come back fine.

I have noticed that when I eat anything covered in bread crumbs, (chicken nuggets etc), pizza, biscuits and doughnuts, the cramps and chills start pretty much immediately. Chicken nuggets seem to cause the awful night atacks and roast dinners seem to cause the worst diarreah and lower stomach cramps. Biscuits and doughnuts cause cramping in my upper stomach.

As i said before I have had loads of blood tests, the only thing that has come up is a folate deficiency. I have seen a gyno and had scans of my ovaries which was all clear. I have also had an upper endoscopy which showed a leaky gut but nothing else and they referred me back to my doctor. Before the endoscopy I saw an excellent consultant who said that it is possible to have coeliac and a negative blood test and mentioned fat absorption, he also said they would work their way from the top to the bottom (of my body) to find out what is going on. However, when actually having the endoscopy it was a different doctor doing it and nothing was mentioned about coeliac disease or anything else apart from acid reflux. It was all a bit rushed and at that point I didn't know how coeliac disease was actually diagnosed. The doctor has now prescribed anti depressants because she doesn't know what else to do.

I suppose I just need some reassurance really and advice on what to do next. The doctors that I have seen make me feel like I'm going mad and because the symtoms can be so random from day to day (apart from the lower left abdominal pain) it also makes me feel like maybe I'm making it all up!  I have kept a diary of symptoms for a while but I'm starting to wonder if a food diary would be a good idea too.

If you have got this far then thank you for reading my post and I hope someone is able to offer me some advice.

 

 

 

 

[GFinDC]

Hi poorlypup,

Your symptoms sure could indicate celiac disease.  Perhaps you could ask for a referral to an expert in celiac disease?  Or someone who has more experience diagnosing it.  Celiac disease is not easy to diagnose at times.  It is somewhat rare so doctors don't see cases a lot.  And the testing is not perfect, although it is pretty good.  Pretty good most of the time leaves room for mistakes though.

I think it is helpful to write down your symptoms before hand and either send them to the doctor's office or bring them with you to an appointment.  It is easy to forget something important when trying to explain symptoms in the office.

Considering your symptoms I'd be surprised if a doctor didn't seriously consider celiac disease as an explanation.  There are several different antibody tests that can be done for celiac disease.  The ttg IgA is the most common screening test but it doesn't catch 100% of people.  So if there is reason to suspect celiac disease then additional antibody tests should be done.  A complete celiac panel is how it is sometimes termed.

Welcome to the forum poorlypup!

 

[poorlypup87]

Hey GFinDC,

Thank you for taking the time to reply to my message. I've just noticed I have spealt Celiac different, I think I may be using the British way! I didn't realise there could be a different spelling across the globe for the same thing!

I'm seeing my doctor tomorrow so will keep a note of the symptoms, there is definitely a link there. Whether it is an intolerance I'm not sure but I would rather rule out the more serious stuff first.

I think sometimes it is hard to get across how your are feeling and sometimes doctors (in the UK anyway) are quick to say it's stress , when in actual fact feeling so sick is what is causing stress.

Hopefully I will get some answers soon.

Thanks again :-)

[GFinDC]

Hi Poorlypup,

You can spell it that way ifn you wanna!   Actually the forum editor doesn't like how I spell celiac either.

I hope you get some answers or at least some good questions from your doctor.  Getting an clear diagnosis is nice, but sometimes they are hard to come by in the celiac world.  I wonder what they mean by showing a leaky gut on the endoscopy?  That might mean something celiac related I'm guessing.

[cristiana]

Hi Poorlypup

I'm British so I'm bilingual on this website when it comes to the spelling of coeliac!  So I'll spell it the British way here.

So much of what you say reminds me of my own pre-diagnosis journey.  I too was told by one doctor I was suffering from stress but was finally diagnosed with coeliac disease in 2013.  Tingling fingers, chills, diarrhea and pain.

It might be good to just confirm with your GP that they actually took tissue samples during the endoscopy - a friend of mine has had an endoscopy but incredibly they never took any, they just looked at her stomach.  

It might be worth requesting that you have a sigmoidoscopy which is to test the descending colon. It's not a bad test and it doesn't require sedation.   I too had the left side pain in the area you are describing and depending on the day it felt like period pain, or like I was expecting a baby and the baby was resting on my hip, or it was burning pain that radiated from my sacroiliac to my groin, or left of the tummy button or to my back where I imagined my kidneys are...  I also had incredible pain in my left buttock and it was beginning to affect my walking.  So I had the same ovarian scan as you but my gastroenterologist then thought to do the sigmoidoscopy - turns out all was well.  Very reassuring but left me perplexed.  So the my gastro. suggested I gave up dairy and after about three weeks the pain had almost entirely gone.  I could hardly believe it.  

 

 

 

 

 

[poorlypup87]

Hi Cristiana,

Thank you for your reply to my post, it was good to read about your symptoms and how similar they are to mine.

I had a nasal endoscopy without sedation and they definitely did not take any biopsys. It was like everything I had spoken about with the previous doctor hadn't actually happened. I also wasn't aware that a biopsy would need to be done to test for Coeliac. I was told after the endoscopy to avoid red wine, cheese, chocolate and tobacco at night and take anti acids as and when. I am a smoker and do drink a glass of red with a bar of chocolate quite frequently at night and it has never caused me any reocurring problems. It is when I add wheat to the mix, that's when the trouble starts. Funny thing is when I stopped smoking for 6 months the symptoms seemed to come from nowhere and were totally awful.

GFinDC I meant to say I have a leaky esophagus not gut, it is apparently a weak valve between the stomach and esophagus, so lets more acid through than it should.

I saw my doctor on Wednesday and she said that the blood test showed I was negative for Coeliac which I was aware of but also agreed to refer me back to the brilliant guy I saw before the endoscopy. I also have to see a neurologist about the pins and needles and numbness in my fingers. Whilst I was there I showed her the ulcers and thrush that has been in my mouth for three weeks and she prescribed some gel to clear it up, so hopefully that will put an end to it.

I really hope I'm not too far away from getting some answers.

 

[Awol cast iron stomach]

Hi poorly pup,

You have many symptoms I have minus the thrush. I have a history of being told stress, undetermined gastroenteritis, GERD, IBS, I'm sure the list goes on, but at this point who cares. I blame gluten for everything. I have spent 2016 pursuing a celiac diagnosis and the firm diagnosis eludes me . I have been able to connect all my past issues to gluten once it came back in my life they all returned. A very bad rerun indeed.

My test results as gluten-free in DC explained above are inconclusive. I state I'm a gluten enigma. My current Dr did not label me celiac (scopes tip to tail) but given how ill gluten makes me they told my husband tell her to not eat it if she says it makes her sick.

In a nutshell gluten for me is a catalyst to the downfall of many issues, many systems, and many foods become innocent bystanders in the aftermath. I got glutened in March 2016 and have not been the same since. My gluten challenge was in Oct 2016 ( I couldn't finish more than 7 days). Now I can eat less foods now, but rotate them more, than ever in my life. It starts with gluten based on my experience. celiac diagnosis inconclusive, they can debunk prior diagnosis for me, I'm not IBS, they suspect celiac but can't label me because my test results aren't in the parameters.  I'm since developing other intolerances. I am just racking up food intolerances the past few months. 

I attempted rice based product yesterday I still wake today with headache/migraine, joint pain , sinus pressure, ear issues and I feel gi inflammation that started a few hours after consumption.  My body went from a problem with gluten , to not being able to eat meat or grains for several months in 2016. Thankfully now I can eat meat it must be very, very lean, and I must support digestion with smaller portions and through chewing. Grain is pain still. To be frank my body and joints dictate what I can eat right now. I say I eat intuitively.

I'm sorry it's inconclusive for you. It's awful to know what's wrong and to try to convey it and be told its stress. It's stresses one even more. My opinion go with the more holistic sounding Dr who says celiac can be missed by tests,  but who will be willing to support guide you to healing path. It sounds as if he/she will be more helpful guiding you to a healing path versus the science based Dr that you fall outside the numbers/parameters of celiac on. It appears you don't fit the parameters and therefore they have reached an impasse to help you. Unless it's a researcher who can sit with unknowns, one comfortable exploring the deviation from norm parameters of your results even they have limitations and pressures if you don't fit their current study design parameters you're a dead end. (By you're in the example I mean hypothetical patient )

As for me I have given diagnose the college try in 2016 now I just want to heal. For me I'm likely avoiding Dr 's in 2017. I'm sick of being sick and focusing on diagnosing being sick. I'm just apologizing to my body for the glutenings of 2016 and having it, help me, help it get back to health in 2017. At this juncture I trust my body. It'd be nice to be recognized/diagnosed after all I went through this year, but I've already spent 40 plus years undiagnosed/misdiagnosed so really nothing has changed. It's just me and my body like it's always been and always will be.

If it walks like a duck, quacks like a duck, it could be a duck, even if a Dr can't scientifically with tests confirm its a duck. It's still something right? Don't eat gluten, food diaries are helpful, but honestly I just eat intuitively at this junction in my health. It means no gluten, avoid most grains, and my body says TBD on all else on a day to day basis until told otherwise. 

Good luck you're not alone. 

 

 

 

 

[cristiana]

20 hours ago, poorlypup87 said:

Hi Cristiana,

Thank you for your reply to my post, it was good to read about your symptoms and how similar they are to mine.

I had a nasal endoscopy without sedation and they definitely did not take any biopsys. It was like everything I had spoken about with the previous doctor hadn't actually happened. I also wasn't aware that a biopsy would need to be done to test for Coeliac. I was told after the endoscopy to avoid red wine, cheese, chocolate and tobacco at night and take anti acids as and when. I am a smoker and do drink a glass of red with a bar of chocolate quite frequently at night and it has never caused me any reocurring problems. It is when I add wheat to the mix, that's when the trouble starts. Funny thing is when I stopped smoking for 6 months the symptoms seemed to come from nowhere and were totally awful.

GFinDC I meant to say I have a leaky esophagus not gut, it is apparently a weak valve between the stomach and esophagus, so lets more acid through than it should.

I saw my doctor on Wednesday and she said that the blood test showed I was negative for Coeliac which I was aware of but also agreed to refer me back to the brilliant guy I saw before the endoscopy. I also have to see a neurologist about the pins and needles and numbness in my fingers. Whilst I was there I showed her the ulcers and thrush that has been in my mouth for three weeks and she prescribed some gel to clear it up, so hopefully that will put an end to it.

I really hope I'm not too far away from getting some answers.

 

Poorlypup

Well done for perservering. Isn't extraordinary that you had the same experience as my friend? What a shame!  I think interdepartmental  communication might be the problem - very difficult.  I feel sorry for the NHS as everyone tries their best but I think having had so many tests myself it is good to double check with the person issuing the order for the tests and then the tester that they are 'singing from the same hymn sheet' - as it were! I've had to learn to be a bit brave about it, but I like to have peace of mind.

 You will probably have read on this site that the endoscopy to do a biopsies of the small intestine lining is still worth while as blood tests can be negative and one can still have damage - I can't recall but one of our regular posters had this happen to her.  (Sorry if whoever that is is reading, I ought to know by now!)

The endoscopy is the gold standard for diagnosis.  It will be so worthwhile your knowing one way or another. It would be a shame to have to give up something if something else were the problem.  Do mention your lower left abdo pain to the specialist you are seeing, they might be able to do the tests for you on the same day?

Keep us posted. If you have to give up gluten because you are a celiac after all, or if you decide to give it up because it is concluded that you have non-celiac gluten intolerance, you will meet lots of great people on this site who can help.

 

 

[deb-rn]

My initial blood test was negative, but I gave up gluten and felt better.  The more I research, the more I learn.  Gluten damages everyones gut.... always.  Some people just don't trigger the horrible physical responses that some of us do.  You probably have a few autoimmune diseases going on at once.  You'll need to peel them away.  Check out the AIP diet to eliminate the worst offenders, then add them back as they suggest to find out what doesn't agree with you.  It doesn't really matter what the doctors say, it's how  YOU  feel!  There are so few good doctors willing to do the hard work.  You just have to be your own detective.  We started gluten free 3 yrs ago and are now gluten, dairy, soy & grain free with only occasional eggs & nightshades.  I started this journey, but my husband has reaped the biggest rewards!  Most of his intestinal problems stopped, pain disappeared and prostate shrunk after we got this all figured out!  We are loving the results.  You could have some Candida or SIBO problems, looking at your symptoms.  The AIP diet will help you find out and heal.  Even if doctors figure it out,  YOU  still have to follow what nourishes  YOUR  system.  It's different for everyone.  Having small children to care for makes it worse!  If you are having food problems, they probably will in the future as well.  You might as well start them on a path of health too!

Good Luck!
Debbie

[Chemist89]

I can't really help cause I'm in the same situation: trying to understand what's wrong with my body. I've always had problems but in the last 2 years I'm struggling with an undefined dermatitis which is driving me crazy, I'm really getting depressed.

 

I replied just because I have the same problems with nuggets (especially McDonalds') which gave me the very first rash I ever had. 

 

I hope you get better and find what's wrong

[poorlypup87]

Thank you everyone for your replies. It's good to know I'm not alone on this journey. I think my other half and my family are starting to get fed up with me and don't really belive the extent of the pain sometimes. So I tend to just keep my mouth shut and soldier on.

Deb it definitely does make it more difficult having three young children to care for and I do wonder if my children will have similar problems as they get older, I really hope not.

Chemist I really understand, I also have some kind or rash that flares up on my legs then disappears only to flare up again a few days later. I'm not sure what it is and my doctor wasn't even interested in looking at it the last time I saw her. I seem to be ok with mcdonalds chicken nuggets but oven cooked chicken nuggets are a big no no, I've also discovered Chinese food makes me really bad but I'm not sure what ingredient is causing that. I hope you get some answers soon too.

Awol your post was really helpful, I think I'm going to see the Gastroenterologist again and see what he says because he was so spot on last time and if that doesn't pan out I'm going to start cutting certain food out and see what happens.

 

 

[SusanNash]

I can't help with the diagnosis part, but suggest you try 200-400 mg of magnesium glycinate in the evening (1/2 hour or so before bed).  This form of magnesium does not usually cause loose stools.  It is very helpful with muscle cramps and what I call Frankenstein foot (stiff calves).  You may also be deficit in B vitamins which may be the cause of your tingling.  B-vitamins are absorbed in the intestines so if they are damaged taking vitamins won't help.  See if your Dr will test you or give you a shot of b-vitamins or try sublingual. 

I hope this helps.

[cyclinglady]

Did you just get the TTG celiac test?  This is a common (first-line) screening test for celiac disease that is cheap and very good.  The problem is that not all people (that pesky 5%) will test positive on the TTG.  I am one of them.  I tested (and still do in follow-up testing when exposed to gluten) positive ONLY to the DGP IgA, yet my biopsies revealed a Marsh Stage IIIB).  If you had a negative TTG, but you and your doctor are still perplexed, the British and American GI Associations recommend the full antibodies panel.  

Open Original Shared Link

[poorlypup87]

Hi everyone,

Just thought I would quickly update. I had my referal appointment with the gastro doctor last week and he dismissed most of my symptoms and told me I have IBS and reflux, wants to put me on another anti-depressant that helps IBS and a different anti-acid. My doctor told me before I went that because I had tried different medication they wouldn't fob me off with more tablets. Well unfortunately that is exactly what happened.

I have decided to take matters into my own hands and see a nutritionist to have an allergy and intolerance test. I am also having my bloods redone this week at the request of my doctor. When I had the coeliac blood test done last time I was barely eating at all so I'm not sure it would have showed up if that makes sense. She seems to be taking me seriously now. After the tests have been done I'm going to try a gluten free diet and see how I feel because I don't seem to be getting very far with doctors at the moment and it's quite frustrating.

Thanks for all the support you have given me, it's great to have somewhere to go for advice. And I hope you are all well.

 

[Ennis-TX]

The mouth ulcers, and generally bad feeling can be a allergy, Corn gives me those issues, a food elimination diet might help you nail down the culprit. Start by changing to a whole food only diet, and removing certain foods for a about a week then reintroduce them for a few days then remove again while keeping a diary of how you feel. I might suggest starting by removing common ones, soy, dairy, corn, lactose,  legumes, peanuts, nuts, nightshades. Try each one at a time removing them from your diet and seeing how you feel for a week without eating it, also only whole unprocessed foods to avoid one of them being in the ingredients.

The tingling issue with me cleared up with magnesium glycinate from Doctors Best. I got it in powdered form where I dissolve it in a juice, or tea to avoid more pills. B-vitamins are another one. I personally like to use Liquid Health Energy &Stress and take it twice a day, another liquid you just add to a beverage to avoid pills and seems to help with stress in combination with other supplements I take. I wish you luck and keep us updated.

[Jmg]

1 hour ago, poorlypup87 said:

After the tests have been done I'm going to try a gluten free diet and see how I feel because I don't seem to be getting very far with doctors at the moment and it's quite frustrating.

I think this is an excellent idea. I would wait until the result of the fresh bloods are in, just in case they prompt the doctors to resume the diagnostic process. If not, you have nothing to lose, and potentially a great deal to gain from giving the gluten free diet a proper go. 

I have a lot in common with you, both in symptoms, experiences within the UK medical system and in testing negative for coeliac. Not the pregnancy part though, that would be very strange indeed...  After a negative endoscopy the gastro and I agreed I'd be gluten free for life based on my reaction to the gluten challenge. I still don't know if I'm one of the coeliacs that slip through the diagnostic procedure or if I'm non celiac gluten sensitive (the default diagnosis for negative coeliac but react to gluten). Nowadays it doesnt really matter. The diet has made a massive difference to my health and I'm happy to live as if the result was positive. There's no nuggets or cake on the surface of the planet that would make up for the results when I consume gluten.

Best of luck!

Matt

[poorlypup87]

Thanks for yourquick replies!

Haha that did make me laugh Matt! I'm glad you managed to get some answers even if they weren't through tests, it's reassuring that your diet helped with the symptoms. I have a GP appointment in a couple of weeks so will wait to get the results and if it's still negative will try eliminating gluten completely.

[Ennis-TX]

Did a bit of research and have two new points to add to this.

1. In the UK if your diagnosed with celiac, gluten free foods fall under medical requirements and you can literally get government prescriptions for gluten free food that your insurance would have to cover. Wish we had this in the US, we only have a tax deduction system which they make you jump through so many hoops it is practically pointless.

2. As for nuggets, and fried foods, I found using Beanitos (a corn and gluten free chip) like the chipolte and garden salsa ones pulsed in a food processor make some of the best breading. I even got a friend who swears making them with the nacho cheese ones. I Loved making hush puppies to nibble one and as a breading for dairy free cheese sticks to treat myself every now and then. >.> I have a bunch of allergen friendly recipes for paleo cakes, herb quick breads, pie crust, pizza crust etc. I would share if you asked.

[poorlypup87]

Thank you for taking the time to post that Ennis, that is really helpful information. 

:-)

[Jmg]

1 hour ago, Ennis_TX said:

In the UK if your diagnosed with celiac, gluten free foods fall under medical requirements and you can literally get government prescriptions for gluten free food that your insurance would have to cover.

Only certain areas still do this and I think the practice will soon be at an end nationally: Open Original Shared Link

 

 

[Jmg]

1 hour ago, Ennis_TX said:

pie crust

Did you see the thread elsewhere on pie crust Ennis? I think someone was after the definitive gluten-free recipe?

 

[frieze]

if your gut problems got worse when you quit smoking, that would make me think Crohn's.  could have both things at the same time, of course!

[poorlypup87]

Is there a link between crohns flare ups and stopping smoking? I have looked a lot into crohns and the symptoms do seem similar to celiac. One of my stool samples showed inflammation but because the one after didn't it was never really followed up. 

[Jmg]

There's some evidence that smoking may prevent or delay the onset of celiac:

https://www.celiac.com/articles/815/1/Cigarette-Exposure-Protects-Against-Adult-Celiac-Disease/Page1.html

I've read a few accounts on here of people who worsened after they kicked the smoking habit.

Why that is appears to be a mystery. 

[poorlypup87]

That is interesting Jmg, although I have started smoking again since. Not sure if I mentioned that already. The symptoms have not lessened, although I'm guessing you open something up once you stop smoking that is unable to be shut down again? If that makes sense.

The one thing that bothers me most is my glands under my neck have been swollen for two months with sore throats on and off, my doctor felt them and confirmed that they are indeed swollen but didn't say much about it other than the reoccuring yeast infections in my mouth could be causing it. Does anyone else have this?

Also last week my neck came out in a red blotchy itchy rash after eating Mcdonalds but was gone within an hour.  I wish I had taken a picture of it because no one believes me! Any ideas what this could be?