When Will My New Life Start?

[Jackpru]

I have been gluten, dairy, soy, nightshades, maize, you name it I'm free from it since June 13th this year.

I have been ill like a lot of you for most of my 58years life. Starting from when I was 5yr old getting shingles and having a nervous breakdown and then going on to having german measles 5 times, hooping cough, hayfever, measles, continuous nasal drip, anxiety.

At the age of 12years had to have my hip pinned as it slipped out of joint then a nervous breakdown

when I as 19years had cystic ovary and my appendix removed + another nervous breakdown

From the age of 23years after having a horrendous birth of my 1st child, had post natal depression.

From then on things got even worse.

Over the years I had a detatched Retina when I was 8 months pregnant with my 2nd child, followed by extreme Post Natal Depression and even rejected my daughter - hair loss, anxiety attacks where I lost my sight - regaining it hours later.

I've had Hysterectomy, Cataracts, Hip Replacement. Numerous investigations for gut and bowel pain. Had Colitis and IBS all my life. Then in 1989 diagnosed with ME?Chronic Fatigue and more or less told to go away by doctors because they couldn't help me.

Not once did anyone suggest a gluten or Cealiac test, which now looking back seems absolutely crazy.

My mother had half her bowel removed and had Rheumatoid Arthritis, my older sister had the same illness and operations.

I just happened by chance to pick up a book "Is Gluten Making you Ill" by Shari Leiberman when I was coming out of a second hand book stall and only read it because I was bored one evening. Since reading it 2 months ago I changed my diet completely but things are so slow.

My arthritis has improved and some joints have gone down in size my stomach has reduced in size but i am still constipated, still have ataxia, still have fatigue, I wont go on.

Just need a bit of help to give me an idea from some of you just how long it took you to see some semblence of a normal life. I know there is no quick fix and also that I have to continue to moniter what I eat because I have been glutened on 3 - 4 occassions. Is my anxiety going to get any better because it really runs my life and I am in a state going anywhere or doing anything. Thanks for this sight, I'm from the UK and there is nothing like this support there.

[ranger]

You poor dear. That is no way to live! Are you diligent in maintaining a gluten free diet? Are you living in a gluten free house or do you share the facility? I was cc'd so much at first, but I kept learning and am getting better now. Mostly learning by poisoning - not a good way to learn! If gluten is your problem, you've been sick for so long that it might take some time to realize the full effects of the diet. I've been on it for 8 months and am not fully back yet, but much better.There is much wisdom and knowledge on this forum - read, read, read. And let me know if there's anything I can do to help. Docs are such dumb #?!*!

[KathiSharpe]

Sweetie, if you're having that many joint and eye problems (and pregnancy/delivery problems! and pain and fatigue) as well, you need to be evaluated ASAP for ehlers-danlos syndrome!!

There's a good chance your doctor has either never heard of it, or will poo poo the idea (because he didn't think of it).

Call the largest teaching hospital or hospital with an excellent orthopedics department within driving distance of you and ask for a referral to either an orthopedist or geneticist with experience in evaluating for EDS/HMS.

I think there's as many responses to the gluten-free diet as there are people - some get better quickly, others take a long time - and some get immediate relief on some symptoms but not on others.

My (completely layman-level) research indicates a link between celiac/gluten intolerance and EDS/HMS, fibro/CFIDS, PCOS, and thyroid disorders. What the link is, I'm not sure. They're all vastly different diseases and EDS certainly isn't an auto-immune problem (at least not in the current understanding of the disease). But, people who have c/gi and one of these diseases often experience at minimum a lessening of the severity of symptoms in the second disease when they go gluten-free - even things like joint hypermobility and TSH levels. It doesn't help everyone, to be sure - but there's a pattern there.

[missy'smom]

I was undiagnosed 10 years for sure. It took me 2 to get back to where I felt that could lead a fairly normal daily life. I was still more fatigued than I wanted to be though at that point and that's when I got my diabetes Dx. Managing that has given me back most of what I wanted to get back in the energy department. I would say that in that 2 years of recovery from celiac disease, I would turn a new corner every 6 months or so and feel another notch better. With the diabetes I have dropped alot of processed foods, incuding gluten-free specialty products out of my diet. There are some that are very safe but I think this has made a difference as well and now I notice more cleary that some thing bother me that I didn't previously realize. Point is, if you can stick with fresh, simple ingredients all the better. It's a catch 22 though because at the beginning we have so little enery and eating simple foods sometimes requires more cooking. But they effort does pay off.

I'll put in a word about depression. I have experienced both gluten induced and stress induced and they are different and I can tell the difference now, since going gluten-free. I have difficult past experiences that triggered depression and had one since going gluten-free that triggered that again. Going gluten-free lifted that ongoing gluten induced depression and I don't stuggle with that anymore. I can cope with everyday situations as I should be able to. Gluten really affects my mind and emotions. But, I know now that traumatic events or intensely stressful situations can trigger that old ugly former "friend" to return. I find that the more I take care of underlying health issues, the better.

Hang in there. Stay gluten-free. It's worth everything we put into it. It takes the body a while to heal. Make sure your meds are all gluten-free! A good multivitamin may be a good thing-powdered or liquid for may be more easily digested. I struggled with constipation for quite a while afterward-not due to gluten. I think the muscles need to relearn to work sometimes. I don't intake caffiene so a little goes a long way in my system-so a good strong cup of black tea(leaf-not bags) will often get things moving for me and help with BM's. The other thing that works well is to suck my gut in and hold it and do that again a few times in a row or a few time throughout the day. Gets things moving too.

Take care!

[The Fluffy Assassin]

Just need a bit of help to give me an idea from some of you just how long it took you to see some semblence of a normal life. I know there is no quick fix and also that I have to continue to moniter what I eat because I have been glutened on 3 - 4 occassions. Is my anxiety going to get any better because it really runs my life and I am in a state going anywhere or doing anything. Thanks for this sight, I'm from the UK and there is nothing like this support there.

One thing to think about is that after a certain age, the body no longer produces intrinsic factor needed to process vitamin B12. The certain age varies, but it's usually around 50 or 60. If you have been an untreated celiac for 58 years, your body's stores of B12 are depleted or exhausted, and even going gluten free might not help you replenish them. You may need to get injections in order to get your B12 levels back up. (B12 malabsorption is usually the cause of anxiety disorders associated with celiac/coeliac disease.)

Coeliac resources UK:

Open Original Shared Link

Open Original Shared Link

[Jackpru]

Just want to thank you all for your replies, its lovely knowing that there are people out there who are in the same position and willing to support me.

One other thing, although I've had no tests for this and I haven't even bothered to tell my doc what I am doing, without having to come off the diet, is there any other way I can be tested to see if I am Celiac?

[missy'smom]

Just want to thank you all for your replies, its lovely knowing that there are people out there who are in the same position and willing to support me.

One other thing, although I've had no tests for this and I haven't even bothered to tell my doc what I am doing, without having to come off the diet, is there any other way I can be tested to see if I am Celiac?

You can have a gene test done and/ or stool testing done-Enterolabs does both and there are other labs that do gene testing as well.

[ang1e0251]

I second the advice about B12. You want the sublingual, methyl type. The neuro symptoms seem to take the longest to heal and with so many years of damage, you may not heal completely from those. But you can improve a ton and feel human again. Yahoo!!

With your doc, you can see if he will diagnose you based on dietary response and other factors like genetic disposition. Or you can just go on the gluten-free diet, feel better and the heck with the dr's.

[Jackpru]

I second the advice about B12. You want the sublingual, methyl type. The neuro symptoms seem to take the longest to heal and with so many years of damage, you may not heal completely from those. But you can improve a ton and feel human again. Yahoo!!

With your doc, you can see if he will diagnose you based on dietary response and other factors like genetic disposition. Or you can just go on the gluten-free diet, feel better and the heck with the dr's.

Yes I think it is to hell with the doctors. Went yesterday to see my consultant for a check up about my hip arthritis and bursitis and told him how much better it felt with going on the gluten free and he replied " well it is common knowledge that arthritis does improve in the summer"

The ignorance is just unimaginable with these people and some of them cannot see further than there next pay packet.

He even had my notes in front of him of all the health problems I had and was even looking and revering to the wrong hip. I rest my case.

[Budew]

I have been asking that question for 5-6 years. Finding things that helped some like B-12 injections, eliminating all grain, iodonized salt, eliminating nightshades, regulating sylicilates, but still quite ill.

I am posting today because I have hope again. I think milk proteins are the culprit. The delayed reactions made it hard to see the connection, but I think I am right!

I have not found a lot of info, & could use some suggestions. I also wonder how long it takes to see improvement?

[ang1e0251]

I am posting today because I have hope again. I think milk proteins are the culprit. The delayed reactions made it hard to see the connection, but I think I am right!

That would be an allergy to casein, the protein in milk and its products. There are many references in the files here regarding avoiding casein. You can look it up on the internet also. There are quite a few diets and recipes for gluten and casein avoidance. They use this type of diet for some children who are autistic.