Feel like giving up

[kam00096]

I'm at the end of my tether. I've been gluten free for 6 months after 2 lots of positive blood tests. No biopsy as I was messed about by the NHS, had already gone gluten-free and refused to do a gluten challenge at that time. Am waiting on an endoscopy anyways due to ongoing symptoms. 

I feel no better than when I was eating gluten. In fact some of the time I think I actually feel worse. I know some of my symptoms may not be connected but honestly I'm so sick of all of it.

Symptoms are:-  

Nausea (every day, worse when falling asleep and waking up), never feeling like I can go to the bathroom properly (swings between D and C), stomach aches (have actually only started since going gluten free - never had pain before), tremor/ shaking  (especially on waking up), increased heart rate/ palpitations (especially on waking up), night sweats, swollen lymph nodes, acid reflux (despite omeprazole twice a day), dizziness and brain fog, tiredness and insomnia, leg pain, chest pain, cough (doctors say reflux), hair loss, acne.

Ive had the lymph nodes checked and they said they're fine just reactive, and all of my bloods are fine except Vit D and parathyroid which were screwy but had gone back to normal (I suspect they're off again now). I can't link any of the symptoms to particular foods or 'getting glutened'. I'm really careful and some days I feel ok, some are worse than others, but it's never connected to one particular thing/product/ incident. The night time and morning symptoms are consistent/ each day and have been for years. I'm so gutted that I've given up so much and still feel like utter crap. Any advice very gratefully received. 

 

[cyclinglady]

It could be your parathyroid acting up again.  Easy to find out.  Ask your doctor to test you.  

[ironictruth]

You sound really sick. When my recent endo was done they sampled the small intestine to check for H. Pylori (negative in my case) which can cause issues. 

Is your diet 100% gluten free? Pills, lotions, and processed gluten-free foods for now?  

Do you get a yucky taste in your mouth at all? Could be bile reflux. 

You should talk to a cardiologist about the heart but it could be your anxiety about waking up to all those symptoms or it could be a sympathetic or parasympathetic response upon standing or waking once the adrenaline and hormones kick in. 

Are you losing weight? Have you checked your blood sugar upon waking? 

The two tests you were positive on 6 months ago, have they been run again?

I feel for you. 5 out of 7 days a week I currently open my eyes and dread waking up and getting through the day. We appear fine to others but there is a war going on inside our bodies and it is exhausting physically and mentally to get through the day. 

I hope you have decent docs on your side. 

 

[kam00096]

Thanks for the replies! Am sorry other people are still struggling too. Docs have been completely useless - last time I went he said I had 'too many symptoms' for the time slot and would have to pick the ones that were most worrying me! And they say they won't check my vitamin D or parathyroid for a year now they've had one normal result. I've had my blood sugar checked loads of times and it's always fine but they've never done a fasting one. And I'm waiting for an ECG but they said that was more to reassure me than anything else. H pylori was negative too.

Im pretty strict about cross contamination/ gluten-free beauty products etc but yes I theory I could still be getting some from somewhere. Seems unlikely though as my last celiac bloods were back to normal range. 

Not really sure where to go with it next. 

 

[cyclinglady]

A year before checking your parathyroid again?  That seems off to me.  Lab levels can and do flucuate.  Google it.  Can you switch doctors?  See an endo?  Get a second opinion?  Pick the symptoms that align with the parathyroid.  Gee, my thyroid can act up even after being constant for a year or more.  If I experience symptoms, my doc runs the tests.  

 If it is celiac disease related, you just have to keep to the gluten-free diet.  No other choices there.  Give it time. Another six months.  

If your glucose readings have been normal, I would not worry about it (i am not a doctor).   In a diabetic, fasting glucose is usually the last test to rise. 

Read more about the parathyroid.  This site is at the top of the Google Hit and it seems very good despite it being a clinic.  

Open Original Shared Link

[ironictruth]

Unfortunately I agree with cycling lady. You may have to get new doctors and new sets of eyes. I think I have had 2 primary cares, 2 cardiologists, 2 gastros, a new celiac specialist gastro, and now working on my second endocrinologist after confirming with a physician informally that the first endocrinologist does not seem like he has the right diagnosis for my thyroid. All of these docs in a year! I trust my new local GI now, am still working on establishing my relationship with a celiac specialist and the new primary care.

BUT, tests are now being run that were not run before.

I really feel for you. I know how awful you are feeling.

 

 

[cristiana]

Hiya Kam

Just one thought ... might not help with all your symptoms but might alleviate some - are you still eating oats, abeit pure oats (those that haven't been cross-contaminated by gluten?)

Some celiacs have issues with a reaction to the protein avenin in oats.  I was told by the NHS to give up oats 'for a few months' but when I went back to them I had a very sore, burning stomach indeed, plus terrible C.  Most celiacs tolerate oats well, but I know at least one person on this forum that can't eat them either.

If you are stil eating oats it might be worth giving them a break for a while?  

[frieze]

yeah, fasting glucose is really for monitoring, not a good test for dx.  if you know some one with a meter, do your own challenge testing....

[knitty kitty]

Omeprazole contains sulfur.  Are you allergic to Sulfa drugs? 

[deb-rn]

As I just posted on another thread.... I have had some issues with various systems in my body for years.  Doctors could never figure it out.  Finally I went gluten-free and got some improvement.  Removing 1 irritant often opens the door for the others to rear their ugly heads!  I did an AIP protocol for 3 weeks and have noticed much improvement of the inflammatory responses.  All diseases are a result of a response your body initiates trying to protect itself from the offenders... including asthma, cancer, diabetes, high B/P, RA, heart disease, MS, etc.  This starts with a Leaky Gut.  Google that to find out more.  I have been reading and watching various online seminars for a few years now.  It all clicked a few weeks ago and my husband and I started the AIP lifestyle.  He saw rapid improvement... he didn't even realize he had some issues!  He's now off almost all his medications (I'm a nurse, so I could oversee that), lowered his B/P, got rid of GERD, shrunk his prostate, significantly decreased his arthritis pain and is off the prescription meds.  As I have studied, the things we crave can be because of the antibodies running around in our bloodstream.  They want you to eat the things they attack... they want something to do.  After a few days when the antibodies decline, those cravings lessen and then go away.  My husband ate eggs  EVERY  day for a long, long time.  During the elimination phase, eggs are off limits.  After he re-introduced them... his stomach felt a little off.  He's re-challenged them a few times and found out he's better off only having them a couple times a week and not on successive days.  We learned so much about how to support our systems without stressing them.  I bought 3 of the online seminars because they were so informative.  I can share them if you PM me with your email address.  We have stopped thinking about what we  CAN'T have and focus on what curative properties some foods have.  Our lives are forever changed.  No more gluten free baked goods, noodles, rice, white potatoes for us.  We still eat better than most people and it's certainly more flavorful!  There is hope, but you have to understand that if you keep doing what you are doing, nothing will change.  Some people have adapted to the Western Diet... my husband and I obviously did not.  I have had a weight problem my whole life.  I have lost weight for periods of time, but it always creeps back.  Calories in/ Calories out is a lie.  I have learned that now.  Low Fat diets were debunked last year by the government, but you didn't see it in the headlines.  They have egg on their faces due to following flawed research to make that suggestion.  We are literally killing ourselves with food... often times food that we have been lead to believe is "good for us".... like whole grains!  Learning these things is a real eye opener!  I'm happy to share if I can!

Debbie (recently retired Registered Nurse)