IíM So Glad I Have Celiac Disease Or Gluten Intolerance
Posted 11 October 2012 - 10:08 AM
Newbie here so be gentleÖ
I thought I would tell my story, just in case others have symptoms that I have had and find this page so it can help them to.
Iíll try not to go on to much, but I might get carried awayÖ
10 years ago, out of the blue I started burping and had a bloated stomach. Doctorís diagnosed reflux, had the tube put down me in hospital and was on prescription Omeprazole. I had 2 tubes down me in that time.
Over the last 7 years, I have been feeling really unwell; I will list the problems below. I just got on with life and battled through though (what else was there to do) doctors were rubbish, even the private ones. I am married male aged 42 with 2 boys under 3 (the loves of my life). I honestly thought I wouldnít see them grow up and constantly thought that.
This was my day (every day for Seven years)Ö
Brushing Teeth (I would be Sick)
Badly Cracked heels on feet (prescribed special cream)
Piles (Bad, prescribed special cream and tablets)
Burping (minimum 100 burps a day, prescribed Omeprazole)
Flatulence 20-30 times a day
Shooting pains throughout the body
Bloated (Bad) people used to say all the time, that I needed to go on a diet
Feeling sick all the time
Painful testicals (admitted to hospital on numerous occasions, passed out due to pain) I was once laid up for 4 months and literary could not walk due to the pain)
Gum disease (Gums were white)
Burning in throat
Sore cracked white tongue (special mouth wash)
Bumps in mouth
Over weight (I didnít eat that much) 15 stone
Eyesight deteriorating (quite badly, had to increase all my computer monitor sizes and just recently had to have another increased prescription)
Muscle aches all over
Anxiety (prescription beta blockers)
Everything was just an effort
Numbness in face
Increased sex drive
High blood pressure (prescribed meds)
Trouble with feet/leg calfs (under hospital, doing special exercises)
Had to have my teeth intensively cleaned 4 times a year, always dirty colour.
If there was a cold in the house, everyone would recover in a couple of days, but I would still be in bed a week later.
On top of all that lot every day (and believe me it was a real effort), I still managed to run my business of 15 years with my business partner, looking backÖ how I did, I do not know.
Anyway, 2 months ago my wife had her friends over she met at baby group when my oldest was first born. They had gone by the time I got back home but my wife said that one of her friends 2 year old had a massively bloated stomach and was just lifeless and she told her to go right to A&E. She had been to the doctors numerous times but nothing was diagnosed. Tests were done and Celiac was diagnosed a week or 2 later.
My wife told me she was diagnosed a couple of weeks ago and I said to her do you think Iíve got that, lifting up my top and showing my belly (it was a joke) she also jokingly replied back, you probably got it, cause you have got everything else). Sometimes trying to make a joke out of it helped a little.
I was curious, so sat at my computer that night and did some research, the light bulb then went off in my head a few hours later.
I thought I would test it out for a few days and I cut out all wheat and glutenÖ
Day 2 of doing this, I woke up without being bloated and not much pain in my stomach (it was still there), but I could bend down a do my shoe laces up for the first time in years instead of sitting on the stairs.
I went full attack after day 2 and have researched researched researched this disease, found the best online retailers for items such as pickle, mustard, balsamic vinegar, pasta alternatives etc etcÖ
I used to drink tea with milk and that would make me feel bloated and sick straight away and I have read that you can become temporary lactose intolerant, so I cut out dairy too (although after 6 months I will introduce it back into my diet and see what happens).
2 weeks on now and guess what. Just guess, go on guess ÖÖÖÖÖÖÖÖÖÖÖÖÖÖÖÖÖÖÖÖÖÖÖÖ
Brushing Teeth (Sick) GONE
Badly Cracked heels on feet GONE
Shooting pains throughout the body GONE
Bloated GONE (Well nearly, 85% better)
Painful stomach GONE (Almost, 80% better)
Feeling sick all the time GONE
Painful testicals GONE YIPPEEEEE THANK-YOU THANK-YOU THANK YOU
Swollen/chubby face GONE
Gum disease GETTING BETTER BY THE DAY, GUMS TURNING PINK
Burning in throat GONE
Chest pains GONE
Dry cough GONE
Sore cracked white tongue GONE
Bumps in mouth GONE
Over weight LOST OVER HALF A STONE ALREADY (eating very well though)
Eyesight deterioratingÖ OK, this is the one thatís freaked me out the most, my eyesight has improved no end and I mean no end. Everything is sharper, blacker, colours are better, no blurred vision. I noticed this 3 nights ago when I went into the garden at night and I could see everything when it was dark, if that makes sense. I nearly cried when I noticed this and is still improving. I donít have great eyesight; have to wear contacts or glasses. Iím going back for another eye test to see how far the improvement is from my last test just recently.
Muscle aches all over GONE
Negative/negative thoughts GONE
Not confident GONE
Everything was just an effort GONE
Numbness in face GONE
Tingling fingers GONE
Increased sex drive GONE, Thatís a shame that oneÖ
High blood pressure Still High, NO IMPROVEMENT YET!!
Trouble with feet/leg calfs GONE
Had to have my teeth intensively cleaned 4 times a year, always dirty colour. ALREADY CLEANER
If there was a cold in the house, everyone would recover in a couple of days, but I would still be in bed a week later. I WILL LET YOU KNOW ON THAT ONE
Whatís my life like now after such a short time, well Iím on top of the world.
Iím laughing, jumping around like a lunatic with my kids, Iím out a lot more, I want to go out more, and Iím focused. I can hold conversations better. I can honestly say I am the happiest man in the world at the mo.
For me to write something this long a few weeks ago would have been impossible. Not a chance, not focused enough.
I probably said enough now, but one thing really bothers me. I have heard of celiac disease and gluten intolerance but knew nothing about them or the symptoms. Why is this disease not more (for want of a better world) advertised by the government and NHS.
So I do know that I need to get tested, but I also know that I have to start eating wheat and gluten again to do this.
THERE IS NO WAY ON EARTH AM I GOING BACK TO ANY OF MY ABOVE SYMPTONS, NOT EVEN FOR 20 MINUTES. IíM NOT GOING FOR THE TEST, I ALREADY KNOW THAT WHEAT AND GLUTEN DONíT AGREE WITH ME (understatement of the year) AND THATíS GOOD ENOUGH FOR ME
Iím so glad I have celiac disease or gluten intolerance, because there is a cure and a pretty easy one at that.
All the best everyone
PS, Iím only on one medication now for my blood pressure and the other 5 tablets are no longer needed.
Posted 11 October 2012 - 10:53 AM
Posted 11 October 2012 - 10:58 AM
I suggest you go to the thread, "Newbie 101" to learn more about cross-contamination and what to expect down the line. I imagine you will have some setbacks as you learn about being gluten-free (we all do), but I also know that you will most likely discover an improvement in symptoms you didn't even know were symptoms.
Oh yeah, and get some nettle tea. (There is a thread on it here.)
Welcome to the forum. And before I forget, you should have your kids tested. This lovely disease runs in families. (If they had suggested testing for me when my Mom was diagnosed, I could have avoided so much trouble!)
Hope the improvements keep coming!
gluten-free since June, 2011
Can't eat soy, corn, or foods high in salicylates.
Nightshades now seem to bother me too.
BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!
Posted 11 October 2012 - 11:16 AM
Negative blood work, positive dietary response
Endocrinologist offered referral to GI if I needed formal diagnosis to follow the diet, otherwise just pass on wheat, barley & rye
and save my money
Posted 11 October 2012 - 11:28 AM
Posted 11 October 2012 - 11:30 AM
Delighted for you.
- Elimination diet using Atkins, 2003 ‚Äď excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy ‚Äď said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 ‚Äď negative ‚Äď Diagnosis ‚Äď Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 ‚Äď all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein
Posted 11 October 2012 - 11:35 AM
"I will try again tommorrow" (Mary Anne Radmacher)
celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007
Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15
Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom
Positive to Soy and Casien also Aug 2007
Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303
HLA-DQB1 Molecular analysis, Allele 2 0303
Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)
Posted 11 October 2012 - 12:15 PM
The rest, however, is something that would probably have a gluten cause.
So you won't test mmm? It can be genetic, ya know. Just a tidbit of info.
Posted 11 October 2012 - 12:26 PM
I'd second the suggestion of getting blood tests done ASAP. Your primary doc can order a full celiac panel.
I am not suggesting that you resume eating gluten...only that the tests still may be positive and the information in those tests may become useful to you in the future.
If you haven't had them I'd urge you to add nutrient blood tests to the list. Celiac Disease prevents absorption of many nutrients so you may need some supplementation while healing. Especially all Bs and D. Others that my celiac doc monitors are K, Iron, Ferritin, Copper and Zinc.
Congratulations on putting the puzzle together - it is frustrating that doctors were not looking for celiac in cases like yours (& mine), but I am very happy that you figured it out.
Read the "Newbie 101" section and ask any questions that may pop up.
Happy healing to you
Undiagnosed Celiac Disease ~ 43 years
3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive
10/27/09 diagnosed fibromyalgia - supplemented with amino acids - improvement followed by substantial deterioration
maybe one good hour per day for ~17 months
8/10/11 - Elimination Diet for Autoimmune Disease - incredible improvement along with clear reactions to most high lectin foods
only remaining symptom - severe heat intolerance / reaction to heat, humidity and exercise
Tomato, Pepper, Potato, Peanut, Soy, Bean, Pea, Citrus, Pineapple, Avocado, Shellfish, Dairy, Grain, Nut and Seed FREE
3/1/12 - Horrible flare -- same ol' symptoms but worse ~ 7/1/12 - Endo: Active Celiac 3+ years - as gluten-free as humanly possible.
11/15/12 - Improving once again - Almonds back - Eggs gone
12/1/12 - Histamine containing and inducing foods FREE -- probable cause of my heat/exercise "allergy"...
...this was one of my earliest symptoms as a child -- the enzyme (DAO) needed to regulate histamine is created in the small intestine.
If you have read this far - hang in there - obtaining health with any AI is a marathon, not a sprint!
Celiac.com - Celiac Disease Board Moderator
Posted 11 October 2012 - 01:16 PM
Good for you, Mr. Happy....things only get better from now on!
Posted 11 October 2012 - 07:50 PM
"Acceptance is the key to happiness."
ITP - 1993
Celiac - June, 2012
Hypothyroid - August, 2012
Celiac.com - Celiac Disease Board Moderator
Posted 11 October 2012 - 09:49 PM
I feel exactly like you, no way I want to put my body through more suffering (now that I finally "got it") just to get tested. I don't know if all my problems will resolve in time since I'm older AND for years played the "game" of "resting" from gluten, or mainly wheat, and then even when I did try going gluten-free I was not always careful about cross-contamination and sometimes did cheat in small amounts thinking what I had was more of a wheat "allergy", and all that probably caused a lot of unseen damage over time. When my gut began to react and my liver function got worse,because my father was a diagnosed celiac I figured I probably inherited the genes from him but I still was in denial for a good while, it took my having some very scary episodes this year to realize this is nothing to play with.
Posted 12 October 2012 - 09:22 AM
That said, you should get testing done asap (bloodwork and endoscopy/biopsy). If you don't go back on Gluten for it the results won't be reliable (but don't put yourself through that. I certainly wouldn't), but it's quite possible that you haven't healed enough yet that antibodies and damage will still show up on tests. If nothing else, get blood tests done for nutrients and such so you'll know whether you have any deficiencies, and can see if they get better in a few months. That'll be a sign that your body is absorbing nutrience again and healing.
And get your kids tested. Pronto. Also, suggest your parents and siblings get tested too, just in case.
Now comes the life-long process of gluten avoidance. It's a sneaky bugger. But good luck! So glad you're doing better all ready.
~ Be a light unto yourself. ~ - The Buddha
- Gluten-free since March 2009 (not officially diagnosed, but most likely Celiac). Symptoms have greatly improved or disappeared since.
- Soy intolerant. Dairy free (likely casein intolerant). Problems with eggs, quinoa, brown rice
- mild gastritis seen on endoscopy Oct 2012. Not sure if healed or not.
- Family members with Celiac: Mother, sister, aunt on mother's side, aunt and uncle on father's side, more being diagnosed every year.
Posted 12 October 2012 - 11:04 AM
Thanks all for the advice and I have booked the doctors but the earliest is on the 22nd this month. Thinking about it, I will ring on Monday and get an appointment with the nurse and get it done quicker.
Thank-you for persuading me to go, I know itís the right thing to do. In all honestly, I got worried that I may have had to eat wheat/gluten again for the test, I just couldnít face doing that. Kidís will get the test ASAP.
I will read thread 101 tonight and make sure I am doing the right things, thank-you.
I'm lucky really; I do all the cooking in my house (a bit of a passion) so following the gluten free diet is a doddleÖ
Going to order a bread machine tonight and start experimenting with the making of wheat less breadÖ If anyone has some good recipes, please let me know and I will try them.
I might start another you tube account and video the recipes and the results, might help someone, Iíll post on here too.
Everyone who is not well and new to this (like me) , keep your chin upÖ It will get better.
I was in London all day today working, feeling confident and bright all day. I just canít stop smiling and itís so nice to be happy. Clients wanted to buy me lunch, but I had leftover Spanish chicken from the night before. The eating out thing could prove tricky me thinks, but I donít care about that, I care about being well.
I've also just noticed a pattern going on when I get in, or I'm in when the kids return from morning nurseryÖ its massive bundles with loads of laughing and my youngest just wanting to hold my hand and show me his Thomas Tank books.
Thanks again everyoneÖ
Posted 12 October 2012 - 11:54 AM
Just a quick question...
I don't know if it is related but everyone of my knuckles have become red/sore and two are cracking (not bad)and bleeding a little.
Anyone have any thoughts???
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