You may be intolerant to some other foods in addition to having celiac. You could see a dietician to assess for FODMAP intolerances. These are types of carbohydrates that are in foods and which can cause reactions such as bloating in some people. You can read more about FODMAP intolerances here:
(Most of the research on this comes out of Australia).
I have lactose intolerance and osteopenia. I get around this by:
1. Taking a calcium supplement which gives me about half my RDI. I make up the rest in food.
2. Consuming lactose-free dairy or dairy substitutes.
3. Where lactose free foods aren't available, taking a lactase supplement beforehand. I had to experiment with different doses before finding what I required for different types of dairy products.
I also can't have fructans, so need to check ingredient lists for inulin which is increasingly being added to gluten-free substitutes to boost fiber content.
I hope you get to the bottom of it soon. That bowling ball feeling is SO awful, and I too have fantasized about sticking a needle into my belly to relieve the pressure! Best I can suggest for symptomatic relief are de-gas tablets and some yoga positions (Google yoga + bloating/wind).
Your hair basically shows your health/nutrition status from three months prior*, so it can become worse even after switching to a gluten free diet. Now obviously you've been gluten free much longer than 3 months, but considering that it can take a while for the body to recover from coeliac damage and start correctly absorbing nutrients, perhaps your body just needs more time? Yay for the horizontal ridges (white marks too?) disappearing from your nails — you're on the right track. May you get fluffy regrowth soon.
*Source: my paediatric specialist when I was suffering from malnutrition as a teenager.
I have reactive hypoglycemia, which was discovered when I too lost consciousness and had massive convulsions due to low blood glucose -- despite having a good meal three hours beforehand.
You'll need to increase your intake of healthy fats, not just cut carbs and increase your protein, in order to get an adequate amount of calories. It was eating insufficient calories that made you lose weight.
I've found it's less about low carb for me than it is about making sure there are adequate fats and protein with each meal and snack, eating about every 3 hours (during waking hours, not overnight, though if I don't eat right I can get lows around 2-3am which require fixing), and making sure that the carbs I eat aren't high GI. I also need to be careful around exercise, making sure I have something on board before I start and something to eat immediately after, but not the typical sports diet of high GI carbs as that would cause a crash. Be wary of gluten free substitute foods as they are often highly refined and low in fibre.
My endocrinologist wanted me to try an equal split of carbs, protein and fats. Apparently that's the standard treatment, but when I went down to 30% carbs I had worse blood glucose control and zero energy. I'm better at about 40%. You may have to play around with your diet to see what gets you the best outcome.
Remember that a low caused by reactive hypoglycemia is not treated the same way as with regular hypoglycemia. If you were to just pump yourself with simple carbs you'd go hyperglycemic then crash harder. I've found that a small amount of complex carbs combined with peanut butter works well for me, but everyone is different.
All the best.
My favourite tip has to do with gluten free bread. It can sometimes taste a little dry or stale, and doesn't seem to keep as well as regular bread. If you dab/flick the smallest amount of water (literally a drop of two, don't overdo it!) onto each slice, wrap them up in paper towel, and microwave for 10 seconds or so you get lovely fresh bread again. Game changer!
Also I don't know if anyone else who is active in this thread is from Sydney, but the Gluten Free expo is on this Friday and Saturday (21 & 22 August). The vendors have massive discounts towards the end of the last day. Worth a visit. http://www.glutenfreeexpo.com.au
Hi and welcome! I'm from Sydney, not coeliac but with a pretty severe intolerance. I think recovery looks different on everyone: some who have fatigue feel better immediately, for others it takes more time, some unfortunately feel worse temporarily. You might be better off asking that particular question in the recovery or coping sub-forums since it's not specific to Aus/Nz and more people may see it that way.
My fatigue problem was improved going gluten free but it was more gradual; I could not tell you how long it took. Now if I accidentally eat something with gluten in it or which has been cross-contaminated it's like I've been hit by a truck!
All the best with your dietician appointment and your recovery.
I think you'll find that what it comes down to -- not that they'd probably admit it -- is being able to pump out more of their nut-free, oat-based muesli bars to cater for the growing demand for nut-free packaged snacks brought about by schools with nut-free policies. It is a whole lot cheaper and easier to procure large amounts of regular oats and not do any of the gluten testing, their profit margins would increase dramatically.
I would imagine they've done a cost-benefit analysis and figured they stand to make a lot more money from expanding their nut-free market share in the cheapest may possible than they would lose by alienating their customers who just want uncontaminated oats. They're in business to make money, not to perform a public service, but it is a shame they can't/won't meet the needs of both markets considering they were the only readily available source of pure oats.
Watch this space, I bet we'll see their range of muesli bars and other oat-based snacks increase without any drop in price. Good for them and for those who don't mind paying more for safe nut-free snacks, but not so good for us oat-lovers!
I'm trying to find a suitable alternative as my health is better when I include pure oats in my diet, but everything is about double the price and that's BEFORE shipping!! I was using them to make my own muesli and protein bars too which saved a lot of money.
A couple of good things I will say about Freedom Foods:
1) They did an excellent job making their new porridge box look as different as possible to the Free Oats box. The visual cue made me double-check the box for more details and enquire further, unlike other brands that just change ingredients without giving any indication of having done so.
2) They were extremely quick in getting back to me when I sent an email enquiry. I hit send and literally had a reply a minute later (someone must have a draft saved). This is a good move on their part considering someone could have been about to eat their product.
UNRELATED NOTE: I discovered San Remo gluten free ravioli in the freezer section of Supabarn today. I haven't noticed them in Coles or Woolworths so I don't know if this is a new product? There were three flavours: spinach and ricotta, beef and chicken. I had the spinach and ricotta for dinner tonight. It had a good texture and taste, held together while cooking and it wasn't gummy like the Pasta al Naturale brand from Coles which I made my gluten-eating husband finish, LOL. It is very high in salt, but I'd buy it again to have as a standby meal. Each pack has two serves, takes 7-8 minutes to cook once your water is boiling and I think cost $8.
For those with other dietary requirements, the spinach and ricotta pack contains milk, soy and sulphites. It may contain traces of egg, peanuts, tree nuts, sesame, crustacea and fish.
Friends, today is a sad day. For some of us, anyway. See I am one of those rare creatures who was able to consume Freedom Foods Free Oats, which test under 3ppm for gluten as found in wheat, rye, barley and triticale. In other words, I can have "oat gluten" (avenin) so long as it's not cross-contaminated with the other forms of gluten.
I noticed that the packs had changed recently and there was no longer the blurb about production/testing methods. So I contacted them and got this reply:
"As our business has grown, so has the need to reappraise our supply chain requirements.
We need to ensure enough volume to maintain consistency of supply and a 'wheat free' oat is no longer a feasible option for us.
Our Oats are now available in the new packaging labelled Porridge.
This product is no longer "wheat free"."
Time to go raid the supermarkets for any remaining boxes.
I haven't flown with Singapore Airlines, just Qantas, but a Google search for "Singapore Airlines AND gluten free" got a number of hits. Here's one one them from March 2013, so not tooooo long ago:
Wowsa, that's a lot of product for $28! I haven't been since I'm not all that keen for a lot of the stuff they were advertising, but mocha cake mix sounds amazing! I might go check it out just for that, though I imagine there probably isn't much left by now. Thanks for reporting back!
I'm glad to hear that you will be seeing an endocrinologist.
I'm unfamiliar with Lo loestrin or running pill packets together, as I'm assuming you're doing. However, given that birth control pills containing estrogen are sometimes used in the treatment of osteopenia/osteoporosis, I think it is unlikely to be impairing on your bone health. Estrogen helps maintain bone density, it's why the greatest amount of bone loss in women occurs just after menopause. Do give the endo your medication history though, some meds such as corticosteroids can reduce bone density.
What I would be concerned about is whether the pill is masking amenorrhea. A lot of doctors prescribe estrogen-containing BC pills for amenorrhea when it is accompanied by low estrogen. They do this for bone and reproductive health. However, if you're only getting your period because you are on the pill, and the reason why you aren't getting it is because of malnourishment, there is scant evidence that it will protect your bones. A lot of doctors do not know this. Food is the best medicine. Have you had your antibodies checked since diagnosis? An endoscopy to see if your villi have healed? If you aren't absorbing nutrients properly your bone health will continue to suffer.
It might be worthwhile tracking what you're eating and your symptoms/blood glucose levels. Waking up hypo might be connected with what you ate - or didn't eat - for dinner the night before. I do find that my blood glucose level is more erratic if I eat the wrong thing rather than just not eat at all. If I don't eat my sugar will gradually fall provided I don't engage in intense exercise. Eat the wrong thing however and it will plummet.