Just Started A Gluten-Free Diet, Need Some Advice Please

[CK1223]

Hello all

 

 

Just looking for some advice really.
For the past few years, I have been constantly tired. At one point I was falling asleep in public!

Along with this, I have had excruciating gas pain in the mornings, and it can take up to 30 minutes to expel all of the gas! Intermittent constipation/diarrhea is also a common thing. I also have daily headaches and a rash on my legs that burns when I itch it, and also acid (not heartburn) that comes up into my throat and hits my tonsils, almost all day every day (brings up blood sometimes so can't be doing my throat any good)

 

Over the past few years, I've been tested for almost everything. I've had an MRI, a CT scan, sleep study hooked up to machines, diabetes tests, countless blood tests, appointments at the ENT. No one can work out what's wrong with me! 
I've tried quitting smoking, eating more fruit, easting more/less carbs, eating less sugar, cutting out tea/coffee, drinking more water, exercising more. None of this has helped in the slightest. 

 

I saw a nurse the other day for a check up and she was concerned about my tiredness. Based on my symptoms, she suggested I tried 3 weeks on a gluten-free diet to see if that helped, as I had already mentioned to her that my mother has a wheat intolerancy. She also advised me that people are more likely to have Coeliac if they have another auto-immune disease (I have Guttate Psoriasis, which is relatively uncommon).

 

So I've started this gluten free thing, and my lovely boyfriend has done it with me too, to give me the extra support. 
He feels fine but I am literally RAVENOUS. 

My meals used to be mainly wheat based, and I would always feel full after a small wrap or sandwich, and would never snack at all through the day (haven't had a snack in years!)
Since cutting out gluten, I am having mammoth sized bowls of gluten-free cornflakes for breakfast at 9:30, and by 10:30 I'm watching the clock for lunch time. I'm also snacking about 7 times a day because I just can't wait for the next meal time. I've been drinking buckets of water to try and fill myself up but it's not working. Cannot believe how hungry I am - never been this hungry before in my life even though I seem to be constantly eating!

 

Does anyone have any advice on what this means? Does this mean I should go back to eating gluten? 
I'm not sure if it's a good sign or a bad one. 

Also any snack ideas that are easy to make for work would be good. Almost everything in my local supermarket is produced on a line that handles gluten

 

Thanks in advance

 

 

[kareng]

This type of medical advice really pisses me off.  Why didn't they test you for Celiac before telling you to go gluten-free?  They can't test you if you are gluten free.  I would keep eating gluten and go back and insist they test you for Celiac.

[CK1223]

Unfortunately my GP is a useless PoS.

He's prescribed me water for bacterial tonsillitis, aspirin to my boss' 17 year old daughter who had actually had a tumor growing on her lung, and told my mum for years that the symptoms she were describing were nothing (turns out it was gallstones all those years).

The nurse who gave me this advice is just a drop-in clinic nurse, but I explained to her why I don't want to see my GP and she told me to see if a gluten free diet helps first.

I suppose this way, if I keep a food diary etc, he cannot deny investigation into the matter like he's done so many times before.

[bartfull]

The hunger is normal.It is part of gluten withdrawal, which isn't just psychological by the way, but a true physical withdrawal. You may get headaches and mood swings too.

[mamaw]

Have  you  thought of  finding  a  new doctor.....

[CK1223]

Oh yes of course. Unfortunately where I live, you are allocated a doctors based on where you live. In my catchment area, there is only one surgery available for the 26,000 people in this town (ridiculous I know). I was signed onto my GP because my mother, grandmother, aunts etc all have him. I have requested a change of GP repeatedly with the practice manager, but they all seem to keep resigning and my letters must then go to the bottom of the pile or something

[1desperateladysaved]

Isn't there another doctor that you can see if you pay for it yourself?  You would need a full celiac blood panel to see if you have antibodies to gluten.  But you need to be eating gluten to have the antibodies.

 

I would care to point out that any change after going gluten free (such as your appetite) suggests that you are reacting to gluten.

 

I hope you will be able to get a definitive diagnosis if you need it.  I hope you will feel better soon.  I did have a period of intense hunger in the beginning of my quest and at other odd times during it.  I make sure to eat protein foods with each meal.  For example if you had poached eggs (stick eggs in boiling water for 5 minutes) for breakfast that would be sufficient.  A small amount of cereal and some butter, coconut or oil could help to fill you up and keep you full a while.  But it may take a while . 

 

I remember home schooling and falling asleep between words on a spelling test.  I am better now.

 

Keep us updated!

 

D

[CK1223]

Hi D

Thank you SO much for your reply!

I've been gluten free for 4 days now and am barely tired at all, had a little hiccup with some malted milk biscuits on Tuesday that gave me the worst acid in my throat for hours after. The rash on my legs and the headaches seem to still be sticking around but I was never expecting this to start working instantly, if it worked at all.

Sadly I am from the UK and private healthcare isn't what it is over in the states (my father lives in San Diego). I live on a little island of about 150,000 people and there is not a single private doctors surgery or private hospital here, so we can only go to the NHS doctors surgeries that are in our catchment area, and there's no freelance doctors that you can pay

The one NHS hospital we do have here has recently started up a drop in service where you can see a GP at any time of the day. I think I will heed the advice on this forum and see if I can get some help with them tomorrow (they usually just tell you to make an appointment with your own GP instead). I don't think I've been gluten free long enough for it to have made a significant difference to any antibodies that would be there if it turns out I am having a reaction

Thanks again for the advice and I'll post an update

[CK1223]

And thank you for the food tips too!

I've been eating gluten-free cornflakes but even 2 big bowls don't see me through til lunch time at 12 (I used to have 1 piece of toast at 9am if I had any breakfast at all, and wouldn't be hungry again until 2pm)

I know all too well how irritating it can be to fall asleep completely unexpectedly. You start feeling like you're missing out on life and all you ever see is the back of your eyelids.

I'm very glad to hear that they found out what was making you ill and that you're all better

[MGR]

Hi CK1223 I am also in UK, and I completely sympathise with you- I also have a GP who prescribes paracetamol for anything and wait and see.... Don't want to discourage you, but you still have a while to go.... Best of luck and I'll be thinking of you!

[GFinDC]

Hi CK,

 

If you don't want to get a diagnosis, it's ok to go ahead and stay gluten-free.  But if you do want a diagnosis, you should get back on eating at least a small amount of gluten every day.  If you wait until later to do testing, the doctors will tell you to go back to eating gluten for 6 to 8 weeks (a gluten challenge) before they will test your blood for antibodies.  That gluten challenge can be very hard to do later on after you have begun healing and started feeling better.  If you can stick on the gluten-free diet 100% without a diagnosis though, then diagnosis isn't really needed.  You should get your vitamin and mineral levels tested though, so you know if there are any deficiencies that you need to work on.  Celiac disease causes mal-absorption, so vitamin deficiencies are common.

 

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy if it causes symptoms.
Avoid sugars and starchy foods. They can cause bloating.
Avoid alcohol.
Watch out for cross contamination.

Helpful threads:

FAQ Celiac com
https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
https://www.celiac.com/forums/topic/91878-newbie-info-101/
 

The blood antibodie tests are:

 

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA

[CK1223]

Hi guys

Thank you so much for all of your replies.

I went to see a drop-in clinic doctor today. He was very reluctant to send me for a test (I expected that).

I explained to him all of the tests I have been through so far to determine the fatigue/pallor/dark circles under eyes (I sleep 9 hours a night!)/acid reflux/digestive problems. He seemed a little more sympathetic after that.

He asked me if anyone in my family had coeliac. I explained that I don't know any of my fathers family so they could well do, and that my mum is wheat intolerant.

Described to him my daily routine of mornings spent rolling around on the floor like an upturned turtle because of gas pain - and he finally said that the coeliac path is definitely worth pursuing.

Just a quick question - I've only been off gluten for less than a week, but do I need to start eating it again before my blood test on Monday? He didn't state whether the antibodies would be gone by now. I don't know what their turnaround time is!

Thanks again for all of your help

I don't have a single friend that has coeliac so it really is great to get some honest and unbiased advice from people who have been through the same thing

You bunch of do-gooders you

[cyclinglady]

I would eat gluten. Between my blood test and mt endoscopy I consumed a ridiculous amount of gluten. I ate a loaf of my favorite sourdough bread for seven weeks, I kid you not! Plus, I ate every gluteny goodie I could get my hands on. I knew after the blood test that I had celiac disease, so it was a kind of farewell party for me.

Antibodies can take a long time to drop or they drop fast. Everyone is different. I would eat lots of gluten to make sure I would get accurate result.

[anti-soprano]

You've been talking about a rash that sounds an awful lot like DH.  I don't have it, but you should search the forum for information.  They could biopsy the rash and give you a diagnosis just from that.

 

Some general info on DH including how to test it is provided in the link below.  If you have DH, you have celiac- no endo needed.  Please note that the MAJORITY of people with DH do not test positive with a blood test (for some unknown reason to me).  They should look into that rash!!

Open Original Shared Link

 

Best of luck and eat some pie for me!!!!

Shellie