Gluten brauche Rat

Verdauungsgesundheit
1

Hi. 

This could be a long one, sorry.

i think I may have a gluten allergy, I was diagnosed with hypothyroidisum 4 years ago and menopause, can't take hurt it's does not agree with me, so I opted for antidepressants, since coming off hrt I have been really sick lost 3 stone, ended up in hospital  with stomach problems and really bad spasms, had a colonoscopy nothing, had barium swallow nothing, had ct nothing, scan on thyroid said it was fine, my symptoms at the moment are loose stools not diorreah but floating, excessive sweating, Very hot scalp with a few scabs, hair loss,  and most of joints hot and stiff, and pins and needles type feeling in head hands elbows and ankles, legs feel like they won't work, popping feeling in stomach, feeling sick lethargy, anxiety, drinking a lot of water peeing a lot, skin mockly, tremors, skin on face very red and flushed and neck skin on my arms looks like it has a yellow tinge to it. Any advice would be really grateful, thank you. 

2

Yellow tinge to me makes me think Liver..

Have you had a fast then Gloucestershire tolerance test.

These might be ideas alongside the Coeliac testing.. pls do NOT just rely on the blood test for Coeliac as it can be unreliable. .ask for the Gut Biopsy....

Just ideas...

I sincerely hope you start to feel better and get results. ..Have u tried Symptom Checker Online?? X

3

Glucose **** Sorry

4

Yes as mikki says yellowish tinge is a symptom of liver problems please ask for a ultrasound and liver function test if there is any damage/problems these will be picked up!

5

Hi Mikki

do you have gluten allergies, I was wondering what symptoms other people have, I have been on all the websites and symptom sorter, can't ask my GP for anything she looks at me like a hypocondriac, so I don't bother asking anymore, she won't even test for t3 or antibodies, after me putting a letter in to her to ask for referral to endocrinologist at last she has referred me only taken 2 years, hopefully endo will do the relevant test.

6

Pointless asking my GP I don't get anything, do you have a gluten allergy if yes what symptoms do you have please. Thanks

7

If you have all these visible symptoms and your doctor is refusing to investigate then I think it is really time to get a new doctor. I've changed doctors before because I was being ignored or treated without respect. You need a good partner in your doctor, and it doesn't sound like you have one.

I don't have celiac as I had a normal intestinal biopsy. But I did have a litany of strange and apparently unrelated symptoms before I went off gluten. Gluten intolerance can produce the same problems as celiac, but it takes longer to get that bad, is how it seems to me.

I had pain in most of my joints, muscle weakness such that I couldn't lift a bowl over my head with one arm to put it on the top shelf, nausea, diarrhea, sometimes extremely painful bloating such that I couldn't breathe normally, periodic vomiting, daily headaches too severe to be treated with OTC pain killers, gas and bloating all the time, audible stomach rumblings such that they distracted other people in the same room with me, fatigue, much worsened depression and anxiety symptoms (at first I thought it was a downturn in an existent depression), mental fogginess which is almost gone since going off gluten, greatly worsened acne, extremely oily skin, little blister-like sores in my mouth, dizziness, and I think that about covers it.

The intestinal distress, abdomenal pain and periodic vomiting either cleared up or greatly diminished in the first week of being gluten free. I likely have IBS, though, as I still get some upset, gas, acid reflux and diarrhea. I can live with that, though, the rest was intolerable. The other symptoms cleared up in the following months with some taking a very long time to disappear. I believe my emergent gluten intolerance prolonged my already existing depression for a few years when I could have gotten better. The depressive symptoms lifted slowly, but the joint pain, weakness and heavy fatigue was gone in four to six months.

Going off gluten was life changing for me, but tests would not have found it. I don't have celiac, and so I don't have the antibodies, neither were my intestines showing serious damage. It was a good and lucky guess that came to me after some research, and I am grateful to have found the answer. There is no test for gluten intolerance except to exclude gluten from your diet for a month and see what happens. It's been more than a year that I am gluten free, and I am still seeing more subtle changes as my body returns to health.

Anyway, look into a new doctor. Mine was wonderful and helped me work successfully through the gluten intolerance hypothesis even after the ttg came back negative. You need someone who listens to you, takes you seriously and cares about your health.

8

Oh right, and I kept getting this really weird film in my mouth like the cells of my palate and inner cheeks were being shed every day. It peeled off like skin does after a very bad sun burn. So weird. I am sure I am forgetting some symptoms, too, as there were really so many.

It snuck up on me quite gradually such that it became normal before it became absolutely intolerable. I'd probably have wound up killing myself, what with already being depressed, if I hadn't figured it out when I did. It was really that horrible towards the end.

I used to think gluten free was the stupidest fad, ever, too. But nope. There is something real going on with with so many people developing it in recent years, though I still think it is exagerated to sell books I was not intolerant all my life, either. It just popped up in my 30s, apparently out of nowhere. I ate a lot of whole grains, too, especially wheat, so when I got sick, I got really sick.

Anyway, hope some of that helps. Good luck to you

9

Hi kristal 

thank you for the reply, I have changed GP 3 times, I am sure they all think I am a hypocondriac, I tell them all the symptoms I have and they say menopause, I know some of it is, and some is thyroid related, it's like having the worst flu 24/7.

10

What you're describing sounds awful and I'm sorry to hear you are not getting much help from your GP. 

All those symptoms can be caused by all sorts of things so sometimes you can be led certain ways depending on what you read. I think that's why GPs are often at a loss as to how to help and why we can often feel we're not being listened to/helped. I take it you have had standard blood tests too? 

The symptoms you decribe are extrmely similar to what I had last year. I am 36 and had no previous health problems- other than IBS and generally not a great immune system but over the past 2 years I've just gradually got one weird symptom after another until it all came to a horrible head last September where I was barely able to function. I genuinely thought I was dying. I was tested for a variety of things, including the coeliac blood test however, I had not been eating much gluten before this (about 50% of the time) so I suspect it wouldn't have shown much plus that test isn't 100% reliable. After those tests showed nothing, the GPs were at the end of their route of enquirey and I was told to come back in a month if symptoms persisted. After reading around, I decided to see if a gluten free diet would help- just as a 6 week experiement. Well, those 6 weeks turned into 8 months as it literally turned my life around and I did not want to go back to feeling that ill. (I shoudl say I have also cut out dairy as after going gluten free, I started getting some extreme gas and intense pain after dairy)

After a few months of quite miraculous changes (literally, no symptoms at all!), I went back to my GP to show them and asked to be referred to gastro as I wanted tested properly for coeliacs- my reasoning was that gluten/lactose intollerance is something I can manage on my own and can find my own thershold but coeliacs carries other health implications and it's a 100% infelxible diet so I needed to know. They did this and after a 6 month wait time, I met with the gastroentologist last week. Thankfully, they were brilliant and I'm getting tested for everything (crohns, lactose intollerance, coeliacs as well as other things I couldn't quite pick up). I felt very well cared for and that I was being taken seriously. Unfortunately, I will have to go back onto a gluten diet for the coeliac test, which I am dreading but at least I know it's time limited. 

If you're really getting nowhere with the GP and you really feel gluten is the cause, then a very strict gluten free diet (it has to be 100% or you're not going to find anything out) will give you the answer and can then give you some 'evidence' to take to your GP to get some further tests done. 

That said, 'gluten intollerance' can't be tested for but can cause all these symptoms so, you may never get a diagnosis as such but you may get a cure, and desptite the annoyance and frustration of a gluten free diet, it's a million times better than the gluten symptoms! 

I really hope you get to the bottom of things and find something that will get rid of your symptoms! 

11

Hi 

thank you for the reply, my GPS I have three in total, one I don't ever want to see again you know the type you walk in and get the look as if to say oh no not you again, the other one is really nice a good relationship with her but she blames all my symptoms on menopause, the other one is ok as well she is actually booking me in for gluten testing, I know it probably  won't show up anything, I did start a gluten free diet then fell off the wagon looking back I felt great better than ever, did you get funny fizzing in your joints and buzzing in head and ears, muscle aches some mornings my legs just would not work almost like really bad flu but worse, and the tiredness never had tiredness like that ever, sweating freezing  also got appointment with endocrinologist about my thyroid medication, I have a list as long as my arm, my stomach keeps popping, on left hand side rashes and scabs and spots lots of weight loss and thirsty.  

12

I had ALL of those symptoms! I first thought i had a virus and then started to get painful little spots/blisters on my face and scalp. They were v painful and itchy. That's what led me to see the gp and they thought it was impitigo or herpes so i was put on lots of meds- antibiotics and antivirals. I thought my other symptoms were due to the medications and it took a while to realise i how bad i was feeling was that it could be related to the sores.

I would get a 'funny feeling inside' it would be like an anxious/shaky sort of feeling but i wasn't actually anxious. Sweating & over heating & then freezing. Pins and needles & trembling in my arms and hands. Brain fog- like confusion and word finding difficulties. And tiredness like nothing on earth- it felt like I'd been drugged. I also got emotional- crying or being quite irritable but for no reason.

I can see how a lot of this would overlap with menopause symptoms!

If you're about to get tested for coeliac then keep eating gluten as it needs to be in your body to show up on the test.

Once i went gluten free, about 80% of my symptoms disappeared in 2 weeks. My body them seemed to go through some weird stuff like nausea and loss of appetite but that was short lived. I'd say after 6 weeks i was completely symptom free.

The skin problems, brain fog and fatigue were thankfully the first things to go as i found those the worst.

The good thing is- if you think this is gluten related, you can just find out on your own by cutting it out. Once you know for sure- the knowledge of how sick it makes you can be enough motivation to keep you on track! When i was doing my elimination diet i are gluten for one day and got most of the symptoms back- it confirmed for me that no amount of bread or cake was worth feeling like that.

13

Hi Scampi18

I have to applaud you for sticking to your guns,  you know when your body is not right!  BetterBetty your symptoms are similar to mine but my blisters tend to be on my limbs and Torso,  my worse symptom is the tummy pain.  In January last year my gallbladder was removed,  after years of pain and being diagnosed with IBS, Kidney colic etc they scanned the gallbladder which was a mess with masses in it.  This seemed to make my symptoms go through the roof being hospitalised many times for the pain and vomitting.  

I went for my appointment this week expecting to be released as the MRCP showed i had no stones in the bile duct (initially after the op there was) .  Turns out they are not releasing me as I have lost 25% of body weight since November, I think that is an exaggeration.  

So now testing for Ceoliac and thyroid!  The tummy pain seems to radiate from the lower right rib down to right hip and across to left kidney and pelvis. 

Does any of this sound familiar?  

I also have sinus problems and migraines!

Have you got your results yet? 

After they finish testing I am thinking of doing an elimination diet anyway! 

Hope your all having a good day 😄

14

Hi 

celiac blood test, negative as suspected, next appointment with gastroenterologist, think it may be something in small bowel and absorption so not getting enough vitamins and minerals, so more waiting, I can feel food popping around my stomach, and yes the pain is unbearable some days and the tiredness it's like nothing I have ever felt before, joints sore and fizzing, and I can't stop eating it's like I have never been fed, I don't just have a couple of gluten free biscuits I have the whole packet then a bag of nuts and a bowl of cereal that's after my breakfast lunch and dinner,  banana, toast, sweets, chocolate, ice cream all in one day. 

I get constipated then really loose, bloated tummy, brain fog, memory loss, terrible sinus problems and great big fibourous hemoroids which are excruciating oral thrush rash on neck and pelvis pain, the joint pain is bad now.

15

Hi Scampi,

Were you gluten free before the blood test, mine came back negative too but I was eating not much that week due to tummy pain. Had a CT Tuesday no results yet. I thought about the menopause but they ruled that out before my gb was removed. I keep telling them my thermometer has broken as I am freezing or sweating. I tell them about the thrush and strange bowel habits. Been in pain this week with terrible pain and night sweats and constipation so have only been able to eat small meals, I kind of expected it as I went to two bbqs last weekend. Yesterday I went really shaky, sweaty,nauseous,brain fog headache etc. so I had some toast! Omg terrible night and now diarrhoea! My dogs stare at my tummy it's so noisy lol. Does it seem like you have a lot of saliva under your tongue? This seems to have developed over past month.

I hope they find the problem for you at the Gastro clinic soon as it sounds awful for you.

The Drs need to realise the impact these problems have on your life!

Take Care