Starting to really wonder.....

[johnojohno]

Morning guys. 

So long story short. Lost 10 kg back late last year. Stress related I believe. ( I Understand this is a big factor with celiacs)

Tested. Found anti bodies in my blood. Doctor states potential Celiacs.

Have endoscopy. Doctor who takes procedure doubts I have it.

Move to London. Move Doctor appointment. Here nothing from Doctors.

Fast Forward from December (endoscopy) to July. Ring up doctos asking what my result were as I hadnt heard anything (While eating gluten)

Get told "oh, you have celiacs"...........Ridicolous that I wasnt contacted. But anyway thats not the issue.

 

Fast forward to Now. Gluten Free diet. I have had 1 day I would say in 4 months that I have had super energised, felt great. Sticks in my mind. Had more bloods for all anemia/deficiencies. Everything is fine. Im still exhausted. Every day. My stomach wakes me up 90 percent of the time.

I dont have loose stools. Never really have. My mood was severly low. Im really starting to feel like this Celiac is dealt with so primitively. 

There is zero sense to any of this. I have tried everything. I watch these shows of people talking like they are dying. Its just painful, everything about it.

 

1)Wondering if anyone here has had the sleep issues. Im really starting to think this disease is entirely caused by mentality.

2) Thoughts on the contradictive studies/opinions of this disease?

 

 

[Ennis-TX]

2 hours ago, johnojohno said:

Morning guys. 

So long story short. Lost 10 kg back late last year. Stress related I believe. ( I Understand this is a big factor with celiacs)

Tested. Found anti bodies in my blood. Doctor states potential Celiacs.

Have endoscopy. Doctor who takes procedure doubts I have it.

Move to London. Move Doctor appointment. Here nothing from Doctors.

Fast Forward from December (endoscopy) to July. Ring up doctos asking what my result were as I hadnt heard anything (While eating gluten)

Get told "oh, you have celiacs"...........Ridicolous that I wasnt contacted. But anyway thats not the issue.

 

Fast forward to Now. Gluten Free diet. I have had 1 day I would say in 4 months that I have had super energised, felt great. Sticks in my mind. Had more bloods for all anemia/deficiencies. Everything is fine. Im still exhausted. Every day. My stomach wakes me up 90 percent of the time.

I dont have loose stools. Never really have. My mood was severly low. Im really starting to feel like this Celiac is dealt with so primitively. 

There is zero sense to any of this. I have tried everything. I watch these shows of people talking like they are dying. Its just painful, everything about it.

 

1)Wondering if anyone here has had the sleep issues. Im really starting to think this disease is entirely caused by mentality.

2) Thoughts on the contradictive studies/opinions of this disease?

 

 

This disease is like a chameleon and seems to change symptoms on people and everyone is a bit different, heck some have no symptoms til it almost kills them with secondary issues like cancer, lymphoma, rupturing the intestines etc.
I did not have ht classic D but constipation, I also had a bunch of other signs that I had grown into and considered normal. My big thing was neurological side of it. I had gluten ataxia where it attacked my brain and nervous system compounded by b vitamin deficiency, I had learned about the magnesium deficiency months earlier and was supplementing for that part of it. Anyway my health was getting bad, tired, random gut pains, brain looping on the same thought over and over driving me mad, bouts of anger and rage. I was running a bucket list before they got it diagnosed.
Wish it was done earlier my immune system developed other issues like corn allergies, bunch of intolerance then years later learned I had also developed Ulcerative Colitis.

There are some mental aspects to it, one part is the effects of vitamin deficiency like the b-vitamins, can be very detrimental to you mental health. Various others have cumulative effects or require others nutrients to work right. SO you have to find your balance and supplement til you heal, or sometimes for life. 

There is also odd fight or flight responses I have noticed from me and others, your body starts to associate gluten and certain foods with discomfort, once off them starting to smell them or thing they might have contaminated your food brings out a panic like fight or flight as you subconsciously attribute that smell, thought, food, etc. with pain and discomfort.

This disease is really not well understood, contradicitve....hell it is the only disease where you have to poison yourself to the point of causing major damage for them to learn you have it.....like "Here eat this poison so we can see if it makes you sick, but you have to be really sick for us to know it is this poison that makes you sick as it only effects some people"

[Jmg]

5 hours ago, johnojohno said:

Fast forward to Now. Gluten Free diet. I have had 1 day I would say in 4 months that I have had super energised, felt great. Sticks in my mind. Had more bloods for all anemia/deficiencies. Everything is fine. Im still exhausted. Every day. My stomach wakes me up 90 percent of the time.

I dont have loose stools. Never really have. My mood was severly low. Im really starting to feel like this Celiac is dealt with so primitively. 

There is zero sense to any of this. I have tried everything. I watch these shows of people talking like they are dying. Its just painful, everything about it.

 

1)Wondering if anyone here has had the sleep issues. Im really starting to think this disease is entirely caused by mentality.

2) Thoughts on the contradictive studies/opinions of this disease?

 

 

Hi Johno, 

fellow brit here. Crappy uk medical experience is par for the course unfortunately where this is concerned, so don't expect too much help from that sphere. Although with a positive diagnosis you should be eligible for dietician advice and monitoring of nutrient levels. 

First, 4 month in is still early days. If you have cracked the diet and are not suffering cross contamination (v easily done) then you still have at least 2 and maybe 8 months of healing to come. So it's little early yet to be thinking that your celiac isn't responding to he diet. 

1. Sleep issues. You don't mention what these are, but yes, celiac is definitely linked to sleep disorders. In fact it's linked with just about everything due to the way it impacts the body. Almost all systems can be affected. You may also find if the sleep issues are neurological in origin that they will be the last to go on the diet. I find neuro symptoms are the first symptom and last to go.

Note also that although Gastrointestinal is commonly percieved as the major celiac presenting symptom, this isn't the case. So your not alone in not having major tummy issues. 

It's not caused by mentality but it sure as hell affects it. 

2. How long have you got? I tested negative so I'm in the ncgs category and some won't even accept that my condition exists. Even understanding of celiac is still developing. Research is ongoing as is levels of incidence. It's up 4 times since the 1950s so something is going on, better testing is perhaps revealing more.

you have positive diagnosis, so you have good evidence to keep you strict on the diet. Eat as well as you can. Try to keep gluten free processed foods to  minimum  and eat fresh whole foods where possible. Treat this first 6 months as a one off healing period and help your body as much as possible.

Take some good quality supplements, regardless of what the tests are saying. B complex, magnesium and a multivitamin are a good safety net if nothing else. 

Read the newbie thread on this site and double check your kitchen etc for possible cross contamination sources. Could be seasoning, shared butter etc. You need to develop a sense of vigilance about this whilst staying on the right side of paranoia!

finally, a warm welcome to a good site

 

[johnojohno]

Appreciate the thorough responses. 

 

The stomach issues have been dreadful the past few weeks and brought hurrendous awakenings.the worst I have slept in a long time. I have had a few gluten foods in all honest. Maybe a mcdonalds twice in 2 months. Which isnt ideal. But I dont seem to feel anything afterwards (terrible excuse I know) 

My biggest worries were my memory and cognitive behaviour! I was in London Bridge station and forgot where I was heading for 15 minutes. My memory is terrible, as is the concentration. So its a bit of a battle at the minute and I am flunking in my new job. I feel like as you said, neurologically I have deteriorated. Wit and brain function out the window. Considering I was a pretty switched on person. Balance and diziness at points. (all this on a gluten free diet after 4 months triggered me too my mcdonalds binge) ha ha. 

I think the memory was the worst. 

 

As you said about the brit medical side being useless. I think you are correct. I understand its the NHS and free etc. But this is just not considered a worry. Ive considered pulling myself into A and E this past few weeks because of the pain and I know this is the only way anyone will give me a thorough look over.

I was also sent for a bone scan ( no reasoning as to why) But from research it seems to be for searching the nutrients in the bone? 

 

Neurological side has been really i think what has been the toughest. My job requires an awful lot of high concentration and memory. Which when I fail at, causes stress, and then I am caught in the vicious cycle!

Thanks for the help guys. Nice to meet some fellow people who can relate. I just feel like celiacs seem to know more then the doctors, which shows primitive practice in order to solve it. Once again, I would never know the NHS or doctors. I understand free health care is health care. But how low on the list this is, is a worry.

 

 

[Jmg]

Bone scan is because coeliac (may as well spell it right if I'm talking to a countryman  ) can affect bone density and is linked to osteoporosis 

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the thing about the diet is that gluten isn't something that disagrees with you, or that you have to cut down on, or just save for special occasions. It would be nice if that were the case, but it's just not so.

its your immune system which is being triggered. It's not an instant reaction, so you can fool yourself into thinking that it's ok. what the tests show however is that the damage is taking place over a longer term and across your body.

For your own sake you need to develop this understanding.

Joining coeliac uk would help. You get a book / online directory of safe foods and others to meet up with if you want.

if your out and hungry McDonald's fries IN THE UK are ok.* If dairy ok then have a strawberry sundae, not the toffee one. Those and a coffee are all I have from there now, although you are supposed to be able to order a burger without a bun, some have done this and used lettuce to hold it! Wetherspoons have gluten free menu and some other chains. 

Its also good to travel with some safe snacks. Protein bars, fruit, nuts etc. Enough so you don't feel tempted to risk something which isn't safe.

some good tips here

one final point, at the moment you are in worst of all worlds. All he hassle of the diet, none or not enough of the good healing feel. You need to get the diet cracked and eliminate gluten entirely, eat lots of nutrient rich foods and kick start the feeling good vibe, because once you get that all of it, the diet, the reading of labels, the awkward conversations etc all become 100 times easier. You just need that connection between the diet and feeling good again. Get that and your on your way.

all the best

matt

 

 

*They're not in the US, see Ennis's post below. 

[Ennis-TX]

38 minutes ago, Jmg said:

if your out and hungry McDonald's fries are ok. If dairy ok then have a strawberry sundae, not the toffee one.

Just needed to point this out while it seems the UK and perhaps even Canada they are. The US McDonalds has wheat in the fries.
Second thought in the US you have to a take more careful with CC and chains, the kids go in and out of these like crazy and think gluten free is a kind of fad. I would avoid chains of fast food restaurants here if celiac.
Sorry just did not want some bloke from here in the US seeing this and going OOHHH the fries are SAFE, then blam married to the toilet for hours.

"

FRENCH FRIES

Ingredients: Potatoes, Vegetable Oil (Canola Oil, Corn Oil, Soybean Oil, Hydrogenated Soybean Oil, Natural Beef Flavor [Wheat and Milk Derivatives]*), Dextrose, Sodium Acid Pyrophosphate (Maintain Color), Salt. *Natural beef flavor contains hydrolyzed wheat and hydrolyzed milk as starting ingredients.

Contains: WHEAT, MILK.

"

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PS I have worked concessions years ago,,,,the fryers were like toys to us, we fried other foods for giggles.....so you can imagine how it might be a issue with a CCed fryer even with any place that has a non dedicated gluten-free fryer.

 

[Jmg]

11 minutes ago, Ennis_TX said:

Sorry just did not want some bloke from here in the US seeing this and going OOHHH the fries are SAFE, then blam married to the toilet for hours.

No that's a really good point mate. I'll amend my post also. Thanks for pointing it out