Do I Need The Tests Or Can I Just Try The Diet?

[up-late]

My dad was recently diagnosed with celiacs but I haven't been tested.

I had a stack of tests about 15 years ago and not being pleasant I have no intention of repeating them. Do I even need them? Could not eating have given a false result? I got tested for just about everything after I started getting really bad intestinal symptoms but i don't know if I was tested for celiacs, I was in a lot of pain and dropped a third of my body weight in less than 2 months. I couldn't eat much because eating caused more pain and it was unbearable, I ended up very underweight. It finally settled down 2 years later but I still have symptoms and was diagnosed after seeing more doctors than I could count as having IBS.

I still have milder pain and now I have other symptoms as well I didn't have before like rashes, poor sleep, muscle and joint pain as well as anxiety on top of looking pregnant and toilet trouble. Now I'm putting on weight too but I'm not getting energy from the food, it doesn't matter what I eat I still don't have any energy and my co-ordination and concentration are up the spout, I always feel like I haven't eaten even when my stomach is full. I'm back to not leaving the house without a pocket full of pills just in case I get an attack. Would it hurt to try the diet? Do I need to have the tests first? How do I find out about what to eat?

[queenofhearts]

It sounds like trying the diet would be good for you; since your dad has been diagnosed, if you respond positively to the diet I think most good doctors would agree you probably have it. The only advantage really to having an official diagnosis is that it allows you to get a (fairly shrimpy) tax write-off, & it gives you more credibility if you need to claim disability status (to get safe food at school or something) but if you have a good doctor, your dad's diagnosis + your positive response would probably be enough to get a letter.

If you do want an endoscopy though, get it done now before going gluten-free for a true result.

And if you try the diet, make sure you are THOROUGH & keep it up for several months or you won't really know if it's working.

Leah

[up-late]

Wow, that was quick.

I'm in Australia so I don't think I need anything more than a doctors letter to state illness. I had heaps of tests done when the symptoms were at their worst so if it was something obvious like cancer it would have shown up. Where do I find out about altering my diet?

[queenofhearts]

Right here! There is a lot of info in the site index, & you can also go to Nini's website for her newbie list, it's very helpful:

Open Original Shared Link

Scroll down the page & you'll see it. Once you've had a look at the basics, you can ask any questions here & someone will have the answer. Or search the boards for previous answers. An amazing amount of info here, I don't know how I would have done the diet without it. And even if you just have a bad day, post here & you'll get loads of moral support!

Welcome!

Leah

[up-late]

Thanks Leah

[AndreaB]

Being in Australia would rule out enterolab if you wanted to have any testing done. It isn't required. My family didn't have symptoms so we wouldn't have know had we not gone through enterolab. Many people on this board have just done the dietary changes and feel heaps better. It certainly can't hurt anything and you will most likely regain your health.....unless you have other autoimmune responses going on. Cut out all gluten in everything including personal care products.

Welcome aboard! You will find a lot of useful information and friendly people here.

[up-late]

Personal care products? How would I find out? Would that cause me to have an itchy scalp, not flakey just itchy, some days it's driving me mad. What about washing detergent? Could there be gluten in that too? I tried changing them before because I had like a heat rash but itchy and without the heat but it didn't make a difference. I didn't think to look for something like gluten. What else do I need to watch out for?

[AndreaB]

That could cause problems. Look for wheat/barley/oat or their derivatives. I don't know how things are labeled in Australia. Yes, you would also need to check detergent. Detergent in the US that is good is All Free and Clear.....don't know if that's down there though.

[Nancym]

The end result of all those tests is that you would, if positive, adopt a gluten free diet. If you think you need to see the results on a piece of paper with clinic stationary letterhead in order to stay true to gluten-free, or if you had unusual symptoms or even no symptoms, then the testing might help. Oh yeah, the only other case might be if you wanted to participate in a clinical study and you have to have biopsy proven diagnosis. Other than that, you could test yourself (with the diet).

[oceangirl]

The end result of all those tests is that you would, if positive, adopt a gluten free diet. If you think you need to see the results on a piece of paper with clinic stationary letterhead in order to stay true to gluten-free, or if you had unusual symptoms or even no symptoms, then the testing might help. Oh yeah, the only other case might be if you wanted to participate in a clinical study and you have to have biopsy proven diagnosis. Other than that, you could test yourself (with the diet).

Welcome to the Board- so much good info here! It seems daunting at first, but keep reading and you will learn so much! Good luck!

lisa

[elonwy]

Your symptoms are word for word what I went through before going on the diet. The itchy scalp thing especially used to drive me insane. I fought for a diagnosis here in the US, but alot of that had to do with convincing my family that indeed this was something real and that it wasn't "all in my head" or "just IBS and stress". Since you already have a first degree family member that has it, you should be tested even if you weren't having all these symptoms. I hope the diet helps, I felt better after two weeks.

There are a bunch of people on here from Australia, so you may even find local help. ( I know how big it is though, I used to live in Queensland).

Welcome.

Elonwy

[up-late]

How soon can I expect the diet to start working? I've been on it a couple of days and so far that awful gas and pain has subsided, I don't feel like I have swallowed a brick and my anxiety has dropped, nothing else has changed though, I keep waiting for it to not work like so many other things I have tried.

I cheated this morning and had some biscuits, the whole thing is back and now I actually feel like I'm going to throw up, I haven't had that happen for years.

Is it still too early to tell and am I just imagining it?

[VydorScope]

How soon can I expect the diet to start working? I've been on it a couple of days and so far that awful gas and pain has subsided, I don't feel like I have swallowed a brick and my anxiety has dropped, nothing else has changed though, I keep waiting for it to not work like so many other things I have tried.

I cheated this morning and had some biscuits, the whole thing is back and now I actually feel like I'm going to throw up, I haven't had that happen for years.

Is it still too early to tell and am I just imagining it?

First, the diet test IS a form of testing, and many doctors will accept that as diagnostic.

As fro how long... You will probably notice it is a slow road back, it realy depends on the extent of the damage to your intestines. Many ppl report a odvious improvement followed by long slow road for the rest to clear up. Each person is a little different though...

[taz sharratt]

My dad was recently diagnosed with celiacs but I haven't been tested.

I had a stack of tests about 15 years ago and not being pleasant I have no intention of repeating them. Do I even need them? Could not eating have given a false result? I got tested for just about everything after I started getting really bad intestinal symptoms but i don't know if I was tested for celiacs, I was in a lot of pain and dropped a third of my body weight in less than 2 months. I couldn't eat much because eating caused more pain and it was unbearable, I ended up very underweight. It finally settled down 2 years later but I still have symptoms and was diagnosed after seeing more doctors than I could count as having IBS.

I still have milder pain and now I have other symptoms as well I didn't have before like rashes, poor sleep, muscle and joint pain as well as anxiety on top of looking pregnant and toilet trouble. Now I'm putting on weight too but I'm not getting energy from the food, it doesn't matter what I eat I still don't have any energy and my co-ordination and concentration are up the spout, I always feel like I haven't eaten even when my stomach is full. I'm back to not leaving the house without a pocket full of pills just in case I get an attack. Would it hurt to try the diet? Do I need to have the tests first? How do I find out about what to eat?

try the diet

[Guest nini]

there is no reason to not try the diet. But if you are going to do this you have to commit to it 100% for at least six months to determine if you notice your health improving. Now keep in mind, if you have been ill a long time it may take you 2 years or more for complete healing. So don't expect to be 100% better after 6 month, but if you notice a significant improvement in your health, then you have your answer.

Positive dietary response is THE MOST VALID diagnostic tool, and once you've been on the diet a while, most people start to notice stronger reactions to smaller amounts of gluten from cross contamination or accidental glutening from hidden glutens.

The Orgran brand of gluten-free products is out of Australia, and they have a great all purpose flour mix. There is also a brand of Corn Thins that is made in Australia, but right now I can't remember the name of the company, but most of their flavors are gluten-free. They do have a few flavors that are not, so check the label (they will put gluten-free on the label if it is)...

You've already been given the link to my newbie survival kit, the naturally gluten-free meal suggestions and other info might be quite useful to you. I suggest that you try to stick with a diet that is primarily foods that are NATURALLY gluten-free like fruits and veggies and clean meats and nuts and legumes, and grains like rice and quinoa... Baked potatoes are my friend!!!!

[Ursa Major]

Keep up the diet, obviously you've already had a positive response, and a bad reaction to the biscuits you ate only two days after going gluten-free. That almost already confirms it, after such a short time, that you need to be gluten-free.

You may want to eliminate dairy as well for the time being, as most celiacs are initially intolerant to dairy. You can try it again in six to 12 months, to see what happens.

I had the insanely itchy scalp, too, and that has gone away after switching to a gluten-free shampoo (mine had wheat germ oil in it).

Be careful of anything (hand cream, lip gloss and other things) with vitamin E in it, as it is likely derived from wheat germ oil, and might give you a reaction.

I don't have an 'official' diagnosis either (even though my doctor agrees I have celiac disease, I should check what she put into my medical file), but since I figured it out myself, after the doctors have failed me all my life, I don't need them to tell me what to eat to be healthy, either. I know what helps me feel better, and what makes me sick, I don't need any doctor's permission to be on a gluten-free diet.

[up-late]

I just checked my bathroom products, almost all of my hair care products have hydrolised wheat protien and starch in them. My ex boyfriend used to go mad on me for sratching all the time, he said it drove him nuts . I'm not looking forward to checking my make up.

Most of my moisturisers are ok except for the sorboline with vit E (I brought thinking it would be kind on my skin) which I've tossed and my fav face product line which I will hold onto unless it gives me problems (it's only the serum so I will replace that part if it turns out to be a problem) I used to use a cream from GNC with old man goat weed in it that was really soothing on my skin but they don't stock it anymore.

My bathrooms looking as bare as my kitchen cuboard, I think I will be going shopping this afternoon. Oh well at least I can see now why I might have been having problems.

Thanks everyone for your help

[Ursa Major]

Well, at least it looks like you've figured out why you itch! And of course, since you always get some shampoo in your mouth, and of course you touch your hair and don't always wash your hands after, you likely kept getting glutened by your hair products at least.

By the way, I believe that you CAN be tested by Enterolab, as they told me that they'll test world wide. You have to send back the samples by courier, and pay the courier charge yourself, which makes it somewhat more expensive.

But if you want official testing done, they actually know what they're doing, and are tons more reliable than what is usually done (blood tests and endoscopy). Check them out Open Original Shared Link

[up-late]

So far so good. Only had one really bad day after eating something that set me off, if this continues I might actually be able to work full time for the first time in years. It looked like I was going to end up on a disability pension at one point it got that bad.

I am really tired though, still have joint pain but at least now my limbs don't feel heavy and I'm not puffed up like a balloon, although my face is still puffy. My nose has stopped bleeding and running too.

I've pretty much decided the idea of not eating gluten is a good one because this is the first two weeks of my life I can recall not having stomach pain (aside from fasting when I was too scared to eat because I didn't know what was making me sick) I still get anxious every time I put something in my mouth and am still suprised when nothing bad happens, I actually feel better after I eat, I hadn't realised how messed up all that meal time thing was for me.

What I need to know now is how do I find out how much damage has been done? I had a heap of problems with irregular heartrate and palpitations and my blood pressure was so low on one of my many friutless emergency room visits the nurse couldn't find my pulse. Also when I was carrying my second child I had problems where it looked like I might miscarry and mid term the routine bloods showed I was not getting enough nutrients. Thankfully my son turned out fine. Could I still be nutrient deficient? What sort of things should I be taking to help bring my system back into balance? Would I need to get a perscription or series of shots? Should I go to the doc and get some tests done? I had a vitamin B shot a few years back and had a really bad reaction (same symptoms but so bad I collapsed in the shower) are there any that could cause a reaction that I should avoid?

[happygirl]

good for you for your efforts! its a steep learning curve, but you are doing well!

one thing that i wanted to add---while your body is healing, you might be eating gluten free and still feeling crappy. that was something that happened with me....i think it was just the amount of damage and my body couldn't process anything right. i would sometimes wonder what was going on when i would get sick on something simple and unprocessed i made at home...then looking back, I realized that my body would take awhile to heal....(although in general, each day I was feeling overall, better). I just wish I had known this back then, so I wanted to share.

good luck and keep us updated.

[up-late]

Just a quick update. I've been gluten free just over 6 weeks now. I can't believe the difference!

I've had a couple of meals that have upset me during that time but mostly it's cross contamination combined with dairy thats given me the bad reactions. I'm not sure about the cornflour they use in the chineese food (I get tired and foggy but no upset stomach with that)

Dairy is a bit iffy but I seem to be ok with goats cheese, fetta or a small amount of low fat dairy.

Red wine (I suspect it might have something to do with the preservatives because the cellared wines seem to be ok) and caffine are out, they give me panic like symptoms.

My blood sugar feels more stable on the diet, I don't get as hungry, feel satisfied sooner and feel calmer after I eat now and for longer rather than agitated (I use wholemeal rice not white) My moods are more stable too, much less anxiety and more consistant, I can see the link between my eating and the reactions I was having (I wonder how many ADD kids are actually gluten intollerant).

I think the gluten free diet is a keeper, it's the only thing that has worked and I've got a stack of benifits from it I wasn't expecting, would have been happy with the settled tummy and being able to go out again but now, no rash, no major anxiety, I'm eating better and it's cheaper because I have to cook instead of getting take away all the time. The dark circles under my eyes are improving, the brown bars across my isis' have gone and I have colour in my skin for the first time in my life. I have stopped putting on weight without starving myself to keep it off but I suspect I won't loose it until I can excercise more, I'm still struggling to do that, my legs get tired and heavy just spending 1/2 hour walking around, I can get up the stairs now without puffing though.

I'll also be talking to my doc about going off the tablets for pre diabeties, they are to help my body metabolise carbs but now I'm not eating carbs I can't digest and the symptoms are dissapearing I may not need to take them anymore.

[monicacpht3641]

Wow, it sounds like you've been through a lot. I've been gluten free for about 4 months now. My dad has been gluten free for about 10 years, and only had an official diagnosis about a year ago. He never could find a doctor who believed him until he recently had his colonoscopy. His doctor decided to go ahead and do the biopsy test and it came out positive for Celiac's. I've always had stomach trouble, fatigue and a general lack of motivation. I've known for a while that it was possible I had the disease as well, but as I never had any severe symptoms like my father, I put off finding out. I decided to go gluten free, and in the last 4 months I've been able to finally eat dairy ( I've been lactose-intolerent for quite a few years now), my acid reflux has dissapeared, so no more presciption meds for that...and I've lost almost 30 pounds. Lately I've found out I'm sensitive to corn, too. It's in everything, it's almost worse than wheat. Oh, yeah, be careful with chinese food unless you know for sure it's gluten free. Most soy sauce contains wheat. You can buy some without it though. Good luck and I hope things continue to improve!

[up-late]

Well I got about half of it sort just going gluten free, then I felt fine and thought I could start eating it again and you guessed it I got sick. After speaking to a doc familiar with food intollerance/allergy I was sent off to the allergy clinic where they've put me on the elimination diet. I've been on it for the last few months and they have given me vitamins as well. I started improving within the first week.

The first thing they asked me was if I'd had the blood test, I had but it came back negative, then they asked if I was eating gluten when I had it (I wasn't but the doc had told me it didn't matter). I told them I wasn't going to eat gluten just so I could get poked and proded some more so I still don't know if it's celiac or an intollerance, I don't know if it even matters since the treatments the same?

Turns out I had to do their wheat test anyway, it was meant to be 1 week, I lasted 3 days and barely. Then they gave me the milk, I got through the week but not comfortably. Amine I lasted 5 out of the 7 days and I wound up with the flu on top of it (and it's summer over here!) So far the other tests have been negative, I've got up to another 1/2 dozen tests left to do (food colouring, preservatives etc). Anyhow finally getting some answers from the docs, I can't wait till it's done though.