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Matthew

Wheat Free --> Gluten Free

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Hi,

I am 26 and I have been wheat free for about 1 year, but have not been gluten free. Prior to going wheat free, I was very sick. And although my brother is a world leading cardio-thoracic surgeon, his suggested treatment for my main symptom, "Asthma" was asthma drugs, which were infact steroids that made me sicker, leading to hypertension and anxiety.

I had never experienced an hour without coughing until I went wheat free, and now I am intending to go gluten free as I still don't feel 100%. I have been eating Spelt bread (Dinkel-German or Farro - Italian). But I think it is also a problem for me. And I had been eating oats (which some argue are not gluten containing) I definately have an allergy to them as I get very bloated.

When I was younger I used to vomit at the sight of anything, everyone thought I just had a weak stomach now in retrospect I think it was propbably related to my gluten intolerance.

Now a big problem for me, is for my western medicine oriented family, I need a test to prove I am gluten intolerant / celiacs, and I am very afraid of going back on wheat/gluten, as I have had a miserable life dealing with the consequences of it to now.

Is there anything I can do? Also have others experienced sever Asthma/Anaphalactic like throat swelling/itchy throat like me. Mine was really really bad,- at times coughing ever 15seconds and at that interval I was trying my hardest tnot to cough. Getting very little sleep because I was coughing all night.

Please let me know

Kind Regards,

Matt

Melbourne Aus.

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You are 26 and allowed to make decisions for yourself, right? Can't you go 100% gluten-free and just let them know it's a personal decision for your own health? You could use the enterolab gene testing ($150 US, I believe) to help with your arguement. And of course, you don't need to be on gluten to do it. All other tests do need you to eat gluten. But you've already made an argument for no wheat with what is called the diet challenge. Go gluten-free for three weeks, try a day of gluten, then go back to gluten-free and keep a diary every day of your food intake and physical and mental symptoms (brain fog, mood swings, stuff like that). That would give you the empirical evidence you need to back up your argument for a gluten-free lifestyle.

And don't forget to eliminate all sources of gluten - oats, lotions, meds and such; watch out for cross-contamination. You might also want to go diary free for at least two weeks. If it is celiac disease, the part of the villi that gets damaged also makes lactase. So if the villi are damaged you aren't making lactase so you will have problems with diary. What's great is the way the body heals itself and you'll be able to eat more without problems. And the argument against oats is the protein itself doesn't have the gliadin that sets off the symptoms, but it is very closely related so that for some people it does trigger the gluten response. That is if your oats are 100% cross-contamination free. I'd lay off of them for awhile too, until your body is better. Sorry for such a long post, but I do want you to be feeling better as soon as possible.

Annette

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Well, it sounds like you haven't been gluten free anyway. If you are still eating spelt bread and other sources of gluten, I would think that would be enough to get the testing done even though you aren't eating wheat.

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Spelt is actually a subspecies of wheat. I never realized that until recently. -- http://www.hort.purdue.edu/newcrop/afcm/spelt.html

But then, just to make things even more aggravating, buckwheat isn't related to wheat at all. It's actually a fruit - related to rhubarb and sorrel. :rolleyes:

Since you're a cereal eater, you'll also want to check your ingredients for malt. Malt is usually made from barley, which is gluten.

You also need to consider cross- contamination issues in the manufacturing process. A lot of people call the manufacturers of their favorite products that seem to be gluten-free, just to verify gluten-free status. These manufacturers get this type of call all the time, so it's no big deal. They can usually tell you if the product you're checking on is manufactured in a facility that also processes gluten, or even if it's made on the same EQUIPMENT that manufactures a gluten containing product. (This is common. A lot of manufacturers do this to cut costs.)

This forum is really great. There is usually someone who knows if an ingredient has gluten or not. Since you're in Australia though, products sometimes have different ingredients. So a product may be gluten-free in the US, but not in Aus, or vice versa. There was a discussion recently about a certain brand of Worchestershire sauce. In the US, it was gluten-free, but in Canada it wasn't. So it really can vary.

I've been having problems with unbelieving family members too. I can't even imagine how bad it would be if they had medical degrees. Yikes! I completely sympathize with wanting to have some proof to show them.

You also should find a gastroenterologist. That's the type of doctor you should be seeing. As wonderful of a cardiologist your brother is, and as much as he must want to help you, he shouldn't be advising you on anything other than cardiology. He just doesn't have the training and experience in GI that a GI doctor has, any more than a GI doctor has in cardiology.

You also should know that even gastroenterologists aren't always up on the latest research on celiac. Up until the last 10 years, doctors were told in medical school that they probably would only see one case of celiac in their entire careers. Up until the genetic research came through in the mid-90's, it was considered very rare, but now they estimate that 1 in 133 people (in the US) have celiac. Most of them are undiagnosed or misdiagnosed as a variety of other things.

There are tests that can performed, but you have to be eating a gluten-filled diet (the equivalent of 3 slices of wheat bread every day) for three months. There are blood tests, and there is also a biopsy. BUT there are a lot of false negatives, and a lot of times it comes out inconclusive. So you could go through all of that and still not be able to prove if you have celiac. It's a personal decision whether or not you want to go back on gluten to go for the biopsy and blood tests, or if you just want to go gluten-free and let the chips fall where they may. There are a lot of people on here who have chosen one over the other based on their own personal and family reasons.

The best thing you can do though is to keep coming to this forum and read, read, read. Read the old posts. You'll be an expert in celiac in no time at all.

I did a quick websearch on celiac and Melbourne, and found this - http://www.sillyyak.com.au/ . It's a gluten-free bakery!!! It's in Northcote, which the original post said was near Melbourne. (You're lucky, we don't have a gluten-free bakery within 100 miles of where I am.) Here's the original post - http://celiac.master.com/texis/master/sear...8d3#m3f39851d10 Which was actually the OLD version of this forum, the posts were from 2001-2003 on this thread.

I also found the website for the Australian Coeliac Society. http://www.coeliac.org.au/state-locations.htm They'll be able to tell you where your closest support group is. The support group people will probably be able to tell you a good celiac-knowledgable gastroenterologist to go to.

Nancy

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If you're coughing every 15 seconds when it's bad, and if it's more like a spasmodic response than a real cough, you may want to be evaluated for reactive airway disease. While asthma can fall under this category, it requires someone who knows what they're doing to treat it. Every case of this sort of thing is different, and while the general advice often includes steroids, your brother should have known that this is not the whole story. I certainly hope he didn't give you oral steroids as a first line! That is *not* the appropriate way to treat asthma - perhaps in his patients who are likely to have different issues, but brochodialotors, leukotrine agents, and possibly inhaled steroids come *far* before *short* bursts of steroids. If you have asthma, particularly asthma that isn't perfectly textbook, you really need to have a doctor who specializes in asthma treating it. They're the ones who will know things like 'you're not supposed to prescribe serevent without prescribing an inhaled steroid at the same time because of the higher, and unnecessary, risk of death' or 'some people can react to the propellant in mdi inhalers, and they should try dpi's instead' or 'the brand name and generics of albuterol inhalers have ingredients slightly different - enough that people may react differently to the two, and it may be medically important to go with one over the other'. (I know the feeling of coughing like that - it leaves you so drained, and feeling sicker and more spent than a flu does, because you just can't breath and you get no rest from the coughing.)

All that aside, I realize your question is about celiac. The first thing I would advise:

This is YOUR health. This is YOUR body. This is YOUR life. These are YOUR symptoms. This is YOUR solution. It doesn't matter what your FAMILY thinks, it matters what YOU think. Have the inate confidence to do what you KNOW to be right. Like the cliche - if your family said it was right to jump off a bridge with nothing to save you, would you? No. Of course you wouldn't. You do NOT have to PROVE anything to them. YOU are the only one who puts food in your mouth, so you are the only one who has to believe in this solution. That's it.

If you are having throat swelling feelings, go directly to an allergist. If this is an allergy, you need to know - and they can get worse without warning. If you're experiencing anaphylaxis, you need to carry an epi-pen with you at all times. It may be more than a gluten issue - you may have an allergy as well.

As for gluten intolerance testing - with the spelt in your system, you might be able to get a diagnosis off of a good panel of blood tests from one of the better labs and/or a biopsy. You can try Enterolab as well (which is more likely to be able to still dx you after being off of gluten), but your family may not believe it, as the methodology has not bee published or peer reviewed yet. But, again, it doesn't matter what your family believes. You're an adult and can make these decisions without their input.

Besides, if they won't believe you when you say that you feel significantly better when not eating something, what are they really saying? That they think you're a liar?

(Sorry if this sounds harsh, but I'm very strongly in favor of people not letting their family bully them (even if it's just subconsciously, and the family's not really doing much of it or it's very subtle) into ignoring what they know to be true. As adults, or even just people able to think for ourselves, we're responsible for our own health, and we CAN make the choices to be healthy and happy! :-) )

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Mathew, I have edited this message to include more on Asthma and less spelling mistakes, I was a bit merry when I posted the original message! :lol:

Happy Christmas,from all of us who have found salvation ( on this site!) I also want you to feel better in 2006.

Before I found this site My entire family were riddled with asthma, heartburn IBs-c, fibromyalgia,irritable bladder, weight gain, brain fog, constipation, piles and no idea that they were all linked. :angry:

I was diagnosed as being 'asthmatic' years ago ,I had a terrible dry cough which was much worse at night. So did my 2 daughters. We ran out of chocolate milk on holiday one year (my 2yo LIVED on the stuff and bananas) and her asthma was toally gone in 2 days......

My doctor said she had 'outgrown it' Yeh,. We had all been on inhaled steroids, flixotide and ventolin, (some of the usual inhalers used DON'T control an Asthma type cough very well, Becotide for instance was usless.Prednisalone (steroids) should only be used in short courses when the asthma is not controlled by the daily inhaled medication. Prednisalone can cause thin bones which are allready a problem for a lot of coeliacs. It is very important for you to have asthma under control, We have a designated Asthma nurse and doctor at our GP surgery who go on various training courses and are very helpful when first getting asthma under control and then getting medication doses down slowly to a maintenance dose and working out a treatment plan for patient self management. Your asthma may well stop once you are totally gluten-free/and or milk free. You should be filling in a 'peak flow' chart to measure your lung capacity night and morning, this will help your doctor to monitor your improvment. You blow into a 'peak flow meter'. A drop in peak flow is often the first warning sign that you have caught a virus, and are heading for an asthma attack. You can then increase the doseage of your inhaled medication for a few days until your peak flow rises again. If this does not work THEN oral steroids should be taken for 5 days. Then a nebuliser. You must find such a Doctor/Asthma clinic urgently.

I stopped drinking cows milk myself (after a allergy test at a health food shop) and my asthma cleared up, I only have a problem now if I catch a cold.

After my divorce I did ATKINS 99% for a year, I lost 2 stone and had never been more healthy or full of energy. I didn;t realise WHY at the time..... My new doctor thought this was very relevant.

My younger daughter has been biopsy diagnosed coeliac and I have 2 copies of DQ1-5 genes (see signiture) so it is plain to me that the asthma was just a manifestation of the lactose/milk intolerance that we have in the family.

My wonderful new GP (new, keen young out of college actually knows about the iceberg theory of celiac!!!) has just sent me for thyroid, glucose, eosteostio (I have a dowagers hump), tests because SHE ACCEPTED GLUTEN INTOLERANCE CAN CAUSE SUCH PAIN, HASSLE AND ILL HEALTH without a positive gluten challenge/coeliac diagnosis as like you I won't put myself through doing it, I would be to ill. If your doctor won't get bloodtesting done or the bloods would be 'false' negative due to low gluten consumption then pay for Enterolab testing genetics and stool sample. I also needed to know for my own sanity and to justify the huge dietary changes. My Doctor and my family accepted the results and the reason why standard testing was not suitable for me. Be strong and fight your corner! Print out Peer reviewed studies on Coeliac/gluten sensitivity/genetics from the BMJ, LANCET etc. to show your brother and back up your Enterolab results if you get tested. Point out that h.pyroi was discovered by an Australian research team to be responsible for stomach ulcers but it was not accepted by the medical community for a long time.

I have just 'diagnosed' my poor cousin, weight loss,bone loss gastro probs) in our annual christmas phone call. I feel really good that she will get well now (if she reads Dangerous Grains!!!) and follows the diet. ** I have another cousin with fibro and infertility that I have just found out about.

So my christmas message to you is to trust your body, and make 2006 the year you get well!Donna

Just for fun my christmas dinner guest list.

Me: gluten, wheat, milk Diagnosed gluten sensitivity, caesin: IBS, Wheat, milk Intolerant. Brain fog, Fibro,

My sister, gluten, wheat .dairy - Diagnosed IBS, brain fog, pregnant. Fibro.

Other sister, eggs, pork, wheat - IBS

My Mum Rheumatoid arthritis( was on Dr Hunter of Cambridge original ellimation diet trial, wheat ,milk)Daughter 1 - no known problems except asthma.

Daughter 2, coeliac, hyper probelms on sugar, Coughing asthma-only when has a virus now.

Long suffering fiance/husband to be - feels better on Atkins puts up with the rest of us. :lol:

Brother in law, (Mother has Chrons)-pale, sickly looking, always asleep!

My Best Friend: Night shade and wheat intolerant. Curved spine. corn

Friend 1: Smokes like a chimney(40 a day) but not allergic to anything so compared to us is healthy!!

So, you are a grown up, you can eat what the hell you like!

Real friends want you to be well, and will support you as much as they can

(Can't spell and have brain fog, so shoot me!)

Happy Boxing day

D. x

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So, DonnaD, I have to ask--what did you serve for dinner? :D Sorry to get off the topic, but I LOL at the end of your post!

Well here it is Patti,

Smoked salmon with organic rocket salad from my greenhouse

Home made Atkins tartar sauce, (mayo,capers,horseraddish,grated onion etc)

Champagne

**

Roast filet of beef

Yorkshire puddings (white gluten/wheat free flour) eggs, soy milk)

Stuffing: wheat free/gluten free bread, onion, celery, hot water only, and also a version with organic minced pork and egg for those who could eat it.

Steamed runner beans, broad beans, sprouts, broccoli.

Sweet potato & onion dauphinoise

Caramelised onion and red wine gravy (thickened with wheatfree/gluten-free free flour)

Roast potato, roast parsnip in duck fat/olive oil

Red wine , double magnum, we were thirsty!

**

Gluten free christmas pudding (Delia Smith receipe with gluten/wheat free flour substituted for normal flour, steamed for 8 hours in rayburn.)

White Pudding Wine

**

Goat, sheep cheese

Port

**

:D

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My hat is off to you! The dinner sounds fabulous--far more ambitious than I could pull off even if there were no dietery restrictions to consider :)

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My hat is off to you! The dinner sounds fabulous--far more ambitious than I could pull off even if there were no dietery restrictions to consider :)

Patti,It was just a big sunday roast really!

My other half is a wonderful chef, he was in charge of the beef. My sister and my friend prepared the veg. I did the pudding, yorkshires, stuffing. roasted the veg.

I really like to cook and find it much easier to cook 'from sctatch' than to pay HUGE prices for gluten-free food and have to then cook different meals for everyone. I'm still on a steep learning curve and do get it wrong and make things that even our cats won't eat!

My sis and I are going to start an exclusion diet after New Year (another huge dinner for 12). Any tips?

Donna

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Thank-you everyone for your help and support, I really feel amazingly different since changing my diet to just spelt (for about 1 week now - I have avoided spelt also). Today there was a lapse though, I had lunch at "Friend of The Earth" organic cafe, and I asked if there was any wheat, and they said no, and unfortunately they forgot about the cracked wheat in the Tabouli (however you spell that).

So I got about half way through that then realised it wasn't parmesen cheese and bam, was a bit annoyed -- was a small intake -- got my sinus going and dry cough happening within 20minutes which is amazing.

It is very clearly related now.

So on the way home I dropped in at the Community Health Centre and have booked an appointment with a doctor for Friday evening (last consultation of 2005) So hopefully I don't have to have a huge argument with a conservative doctor to get me the blood tests. I also hope I can get the genetic test in Australia, the doctor may not have heard of it. I would like to do all this without involving my brother so I can just show him the results at the end. (That's if I don't get a false negative.)

Also It's amazing to hear from other people who have had the coughing thing, because I was ridiculed all my life about it and tried to supress it, which was really hard as it was a burning itch, that drove me mad, so good to hear that I am not a lone pyscho. It does make me worry that there are other people around with so called asthma who actually have some other immune response and the coughing/asthma is actually a symptom.

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