No idea what to do next

[kam00096]

So after a 6 month wait (on the NHS) I finally saw a gastroenterologist today and surprise surprise it was a complete and utter waste of time. Or rather it wasn't as the whole appointment took less than 5 mins. They've basically said they'll do an endoscopy, but not a biopsy as I won't do a gluten challenge (I cannot risk being too sick to work again).  So I'll never be diagnosed. They were meant to be referring me to endocrinology (to check for Addisons) but wouldn't and won't prescribe me anti-emetics despite me being sick as a dog. I have absolutely no idea what to do now as I was banking on this appointment helping me in some way. 

Basically I've had weird gastro and neuro symptoms for over 10 years and had two positive blood tests for celiac, extremely low vitamin D and raised parathyroid in February. Went gluten free then on docs advice as waiting times are so long. Since then the neuro symptoms cleared but the stomach stuff is pretty much the same. And over the last month the neuro symptoms have come back too. 

So I have daily nausea (particularly severe when I'm just on the verge of falling asleep or waking up), diarrhoea, trapped gas, possible acid reflux, dizziness, shaking, night sweats, waking up every morning shaking all over and with palpitations, muscle and joint pain, sores on my scalp, hair loss, hyperpigmentation... 

I don't know if everything's getting worse because there's something else going on as well as celiac, if it's not celiac at all or if it's that I'm not being careful enough and am still getting gluten. I'm terrified that I'm feeling worse again as when this cycles back to me being dizzy all the time I'm too ill to drive or work.

I'm 32 and I've been ill since I was 18. I've wasted my whole adult life and now I've restricted my diet and yet am getting worse not better. 

 

[Jmg]

9 minutes ago, kam00096 said:

I have absolutely no idea what to do now as I was banking on this appointment helping me in some way. 

I don't think a reputable doctor is just going to give you anti emetics, they have a duty to try and find out whats wrong first. You still have the option of doing the gluten challenge. You just need to weigh up the pros and cons and see if it's worth it to you. A positive diagnosis may help you get that endocrinology referral, although there's no guarantees obviously. 

If you've decided against, that puts the medical establishment out of the picture and you need to fill the gap. You need to act as if you've had a positive diagnosis. That may mean exploring for yourself any further intolerances - you've already mentioned dairy may be an issue - I find it can give me the stomach problems, though not the neuro. A food diary is your friend here, eliminate and then add back. You may want to explore fodmaps also. 

Then there's the same advice on cross contamination, etc we discussed previously. Finally, some positive steps in healing the gut via probiotics, bone broths paleo diet etc. 

Have a look on the forum at how newly diagnosed coeliacs are advised to go about the healing process. It takes time but the results are usually good. But do consider a challenge also - because to go through the endoscopy without the biopsy could leave you forever uncertain.

Best of luck

 

[cyclinglady]

I have a formal diagnosis (3 years).  I am glad that I know for sure, but my hubby does not have a formal diagnosis.  He went gluten free 15 years ago per the poor advice of my allergist and his GP.  Well, it worked.  Took a year for him to master the diet, but he knows and I know that gluten makes him sick.  Will he do a challenge?  Heck no!  He will say though that I get way more support from medical and friends, but that is it.  He is in charge of his own health and you can be too. 

With two positives on two different celiac panels, I bet you have celiac disease.  But you should be seeing improvement.  You should be very careful with your diet.  Are you sure you are really gluten free?  Read up on these celiacs who were not getting well when they thought they were really gluten free:

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(This study found that celiacs healed when they did not go out to eat, stopped all supplements, and stuck to a whole foods diet.)

Also, here is this about celiac testing and not getting a biopsy:

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i hope you figure it out.  

[strawberrymoon]

I would say with two positive blood tests you do have celiac and personally I wouldn't put put myself through the hell of eating gluten for more intrusive tests. 

I can relate to a lot of what you've said here. I've found the NHS useless and have been finding own way around things, mainly with the help of this site. I've refused tests as things are so severe with me I can't put myself through it, my gp is as convinced as I am that it is celiac as I also have thyroid problems and the two are often related.

The shaking and dizziness etc you described could be vitamin deficiencies, B12, folate, vitamin D, iron, I have similar symptoms to you and also have a lot of tingling and numbness in my legs and arms which seem to be down to B12 deficiency. The hair loss is typical of thyroid problems, also palpitations, as I mentioned above, it is very common to have low thyroid function with celiac so it may be worth having that checked, palpitations can also be a sign of low iron levels.

I hope things get better for you, it's a very isolating thing to live with (so I've found) doctor's don't seem to know an awful lot, in my experience, and I have felt a couple of times that I've walked into the surgery and taught them a thing or two by doing my own research and explaining my situation with food. I'm currently on to 7 'safe foods' at the moment, (up from 2 thanks to digestive enzymes and acidophilus probiotic which no medical professional advised me to take, I got that information from the wonderful people on this website :-)) I can only eat a few vegetables and fruits at the moment, I know and have faith it will get better by reading other people's experiences, but it's all trial and error and getting to know your own tolerances and restrictions

 

[emma6]

i can definetely relate to some of your symptoms and frustrations with doctors, ever since i tested positive for celiac disease, when i ask for referrals or tests for my other symptoms which are getting worse they just blame it all on celiac disease. almost like they found one thing wrong with me and feel like their work is done.

i would suggest cutting out diary/lactose because if you do have damaged villi it will be harder for them to process the lactose.

also you could try asking for a h.pylori test to rule that out if you havn't already, from what i understand its quite common and has similar gastro symptoms.

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[ironictruth]

Please get your cortisol levels checked and mention the symptoms, positive celiac test, and hyperpigmentation to a primary doc and ask to see the endocrinologist. Or do anything you can to get into a doc who will take you seriously. Is it difficult where you are to see an Endo?

A LOT of your symptoms are similar to mine. My stomach pain and nausea increased recently. I was not eating gluten (it turns out I was glutened though) and they still did a biopsy for me. Also, my left adrenal gland became calcified in the last 5 months. My cortisol was normal, low then normal. 

It is terrible to wake up dizzy, shaky and with skipped heart beats. I find dairy, soy, gluten-free meal shakes which are high protein help. Morning is when cortisol is in demand and eating helps. 

My nuero symptoms have recently progressed too and after a glutening an attending I saw at the hospital recently suggested motor neuron disease which scares the s$#& out of me. 

That being said, I have learned from here from good folks that once you go gluten-free you react stronger to it. So you may be still getting glutened now. 

My endo sees celiac as a systematic disease, not just attacking the gut. It sounds like your adrenal and thyroid systems are at risk like mine.

I hope you are able to get some answers soon and with that, some physical and mental relief! 

 

[GFinDC]

Hi Kam,

I am sorry you are having symptoms.  Salmon, mackeral, and sardines are good sources of vitamin D.  I saw your post about Addison's Disease.  Selenium may help your symptoms there.  You could also try stopping caffeine for awhile and see if that helps any.

It's easy to get gluten in your diet without realizing it.  Anything processed is suspect unless you know for sure it is gluten-free.  That includes any kind of drinks and vitamin pills.  If I was you, I'd be sticking to a whole foods diet as much as possible right now.  It's much simpler to avoid gluten that way.

Food intolerances can be tricky to figure out, because symptoms don't always show up the first day.  Sometimes it takes a while for the symptoms to build up.  Like with nightshades.  Potatoes have an alkaloid in them that is hard for peoples bodies to process.   So if you eat too many potatoes in a brief time they can make you sick.

Vitamin deficiencies can cause lots of symptoms by themselves.  There are some diseases that are caused by vitamin deficiencies, like ricketts and scurvy.  I hope you figure it out soon and feel better soon.

[kam00096]

Thanks for all of the replies. I've just found out I'm not getting to see a dietician because of not having a definite diagnosis which is another blow. I've had loads of bloods done but they just say they're all normal. I did have low vitamin D and high parathyroid but it's sorted itself out after a course of high dose vitamin D and they're not checking it again for a year. No chance of getting referred to endocrinology, gastro won't do it and neither will my gp. I've tried giving up coffee and all fizzy juice and it hasn't made a difference. I'm exhausted and scared and still have no clue what to do next. My gp has zero experience dealing with this type of thing - last time I was there she said it could be because I've restricted my diet too much and I should eat more gluten-free replacement products - everything I've read online says this is the worst thing to do! I'm asking for a copy of the last blood results this week so I can go through them myself but other than that I'm pretty stuck.