UKGail

Marilyn - sorry to hear about your lupus diagnosis. Has the doc decided which of the various manifestations it is? I do hope it is one of the milder, less troublesome types.

If the OP is very sensitive to corn, then tinned foods might be a problem (due to the can being lined with a corn-derived product)- see posts by Bartfull who is trying to manage a severe corn intolerance and can't eat canned food. Hopefully the OP is not as sensitive as this, as canned meat, vegetables and fruit are great for easy, wholesome meals.

As Kareng mentioned, a crock pot is a great way to cook up a large batch of easy, tasty and nutritious food and is safe for ADHD sufferers.

IH, you have had a tough time. I really admire your positive, forward looking attitude!

Lisa - I understand your point about BC pills interfering with the natural cycle. I took them for about 10 years, and stopped when we started trying for a family. I was one of the lucky ones in that my periods returned straight away. It did take a year for me to fall pregnant though, and I do think that would have been due to 3 factors a) age over 30 b)adjustment after being on bc pills and c) maybe some influence from gluten intolerance.

Just an observation: the posters in this thread seem to have/have had mainly neurologic celiac symptoms. I am also sero-negative, and I think IH may also be? Anyone else? Any thoughts on this?

I used to get regular nosebleeds, particularly as a kid. Only once since going gluten free, and that was when my sinuses, which are also a problem, were particularly painful.

Interesting about the vitamin K.

For me, I suspected it might be linked with systemic inflammation. Another of my symptoms was painful varicose veins in my legs, and so-called "pelvic congestion", which I was told is varicose veins in the pelvic area. I've suffered from this my whole adult life, just not at a level to pester the medical profession. Since going gluten fee I've noticed that the veiny patches on my legs stopped throbbing, and the pelvic discomfort seems better too, although that is hard to distinguish from pain to ovarian cysts (which I also had) and from abdominal pain due to more classic celiac symptoms.

Yes, I know what you mean. I am still reacting at a lower level, so I keep thinking it may not happen next month. But it does...

For me, it is very light and short (well, at least compared to what I was used to earlier in life...). At this stage I don't know if it is because I am simply peri-menopausal, which is quite likely at my age of 47, or because I have not yet completely recovered. Time will tell.

I hope it goes well for you from now on. I would be interested to hear. PM me if you prefer. My rheumatologist was quite curious about this effect of going gluten free (he wasn't celiac-savvy), and he asked me to let him know how things progressed for me even though I am no longer actively under his care, as he wished to learn more. It would be really helpful if I could say that I am not the only one...

Hey Dani - That is really great news. I am really happy for you. I think you said you had been without your periods for a very long time?

May I ask how long it is since you went gluten free?

So it's a bit ironic that Docs have such a hard time diagnosing "seronegative" celiac disease!

yes, I think that's right. A good rheumy observes for a period of time and might decide to diagnose based on symptoms.

That is good news, albeit you have had a worrying time!

Yeah, that's it. I can't take anything for it, except possibly one dose at the outset. It doesn't touch the pain at all. I also get bad nausea, and medication when I have a migraine/glutening just makes it worse.

As for temptation, I don't feel it. My migraines and nausea/sickness with body aches and pains are so bad for a day or two (I am typically fit for nothing in bed) that I have zero desire to risk another episode.

Its nice to know I am not alone in this!

Getting a migraine is one of my primary symptoms of a glutening, just from cross-contamination or (for me anyway) by inhalation of gluteny cooking fumes.

Oh, and I take paracetamol, maybe with codeine if I ache particularly badly.

These days do seem to becoming fewer in number though.

On the days when I feel I am finally getting a good grip on what I can and can't eat, I feel much more energetic (well everything is relative!), so I think, great, I can get a few of the myriad outstanding jobs round the house done. So I then run round the house like a mad woman making hay while the sun shines, while my husband looks sceptically at me. The next day, regardless of what I ate the day before, I'll wake up feeling done in and achy all over. It obviously isn't a food issue, I think it's just my stamina is so compromised from years of struggling through indifferent or outright bad health, that I guess I'm not going to become superwoman overnight. Despite my best attempts...

Hi Ava Rose - just a quick note to say welcome. Please keep eating lots of gluten (supposedly at least the equivalent of 3-4 slices of bread per day) until your biopsy. I made the mistake of eating gluten light in the few weeks before my biopsy as I couldn't bear it any longer, and my biopsy was negative.

Once the biopsy is over, then you can give the gluten free diet a proper trial to see how it helps you.

I have been gluten free for nearly 6 months and I still hardly ever eat salad and not much raw fruit. Not because it has gluten in it, which obviously it doesn't, but because my damaged digestive system finds it simply too much like hard work. I find I am much more comfortable in sticking to cooked vegetables, and plain, simple foods while my body is still recovering.

Even if your biopsy is negative, do give the diet a proper trial as many of us have felt much better for it, despite the current tests coming back negative. Do use the search facility on this board for further information on your particular symptoms and problems.

Best wishes.

My periods stopped at age 44, after I had been feeling unwell for some months, with, including other things, hot flushes and low sex drive. A gyn doc diagnosed ovarian cysts and gave me a short course of hormone for them. The cysts resolved, my periods restarted, and the hot flushes died away. At the time I was had started eating a low gluten diet, and a GI biopsy came back negative.

Fast forward another 1-2 years of eating a lot of gluten (a GI having told me I didn't have celiac!), and worsening health problems. The hot flushes gradually came back, and my periods stopped again. Blood tests "confirmed" that I was "post-menopausal" at age 46. I went fully gluten free as a trial under the care of a rheumatologist. Within a few days the hot flushes stopped completely, my periods restarted, and have been perfectly regular in the 5 months since then.

I am convinced that my female problems are linked to my gluten sensitivity.

IH - please do. Happy to chat about my pet topic! There is more than I wished to put into a brief post.

And slowly is absolutely the way to do it, as you can only go as fast as your body can cope with!

IH - "My doctor tells me "Be Patient". I am, I am!!...but it is not easy as I am in terrible pain and I cannot take a thing for it."

I am sorry to hear this, particularly as you are so positive and upbeat in your numerous posts here. I think I read elswhere that you lost a lot of muscle when you were ill before diagnosis, and suffer from major nerve pain. I had a similar problem, albeit not as badly as you, about 9-10 years ago after a car accident. I had soft tissue damage in my neck, shoulders, spine and knees, plus some sort of nerve damage to one shoulder. I was in awful pain, couldn't move, couldn't look after the children or the home.

Normal physiotherapy didn't help as the inflammation just got worse whenever I excercised. Osteopathy helped a bit (but not enough for the money!), cranial osteopathy helped more, as it seemed to send messages to my body to calm down a bit. What really did the trick though was 2 things combined together 1) a gluten free diet - accidental, I was just trying to get healthy - and 2) specialist pilates-based rehab work.

Pilates did three things, firstly it trained my body to relax using gentle breathing exercises and gentle repetitive movements; secondly it worked on stretching out those tight muscles in those hard to reach places; thirdly it worked on building up the core muscles around the abdomen and spine (and the neck too). Once I got there I could restart a more general aerobic exercise regime. It was slow going, taking about two years, but it worked very well. The gluten free diet was a prerequisite, as once I gradually slid back to eating normally once I was fully better (and busy with work and family), the muscle inflammation came back, and stopped responding to the pilates regime.

Do you have someone works like this with you? If you don't, it might possibly help if you can find someone suitable?

Got to go. Got a report to write tonight.

IH "I always say I "wish I were a NORMAL celiac"--you know, 6 months on the diet--and someone feels great? If only. It's going to take me years."

Ha Ha, yes I have a friend who is one of those. Diagnosed by positive blood and biopsy last year, after feeling tired due to anemia. She had previously been one of those people with boundless energy and enthusiasm. Now feels fine, and only gets a mild stomach ache if she gets zapped. CC doesn't seem to bother her too much.

As for me, well I've been tired and have struggled with various symptoms for 25 years. I have no antibodies to gluten. A doc couldn't find any villous atrophy a couple of years ago after a gluten lite diet. Having been put on the gluten-free diet by a well-meaning rheumatologist, a GI is not likely to find any now either. I got about 70% better within a few weeks of going gluten free, including many of the longstanding problems (which I hadn't previously thought were gluten-induced), and the rest, are still hanging around. And that is by eating mostly unprocessed foods, avoiding dairy and oats, taking enzymes, probiotics and vitamin supplements, not eating out and banning gluten from being cooked in the home. I am not complaining, but it does perhaps go to show how wide the spectrum of symptoms, and their severity is. And I know from reading many of your stories here how tough many of you have had it prior to diagnosis, and how hard you all work to find your way back to good health, in particular those of you who are suffering from super-sensitivity, multiple intolerances or other serious health conditions. It is your posts, current and past, who help me decide day-by-day and week-by-week how to manage my own healing process.

Bartful I am so pleased you are starting to find some foods which you can tolerate. I am interested to hear how it carries on for you.

Whilst I don't have your huge problems with corn etc, I have been trying to narrow down the causes of my remaining problems (mainly fatigue and brain fog, with digestion problems and some abdominal pain - but all variable so there is a cause to be found there somewhere). Anyhow, I have been keeping things quite simple lately, and have noticed that I feel so much better with a large portion of salmon (tinned for me is fine), a boiled sweet potato, brussel sprouts and peas, just salted for seasoning. Delicious and filling. The gluten free rice and buckwheat porridge with some coconut-based gluten-free milk for breakfast was not good. Even a banana at lunchtime was tough on me, but this is not always so, when I feel well. I suspect the lingering after effects of a probable minor glutening a week ago (the biggest clue for me is a migraine, plus other follow on symptoms). I really don't think you can beat a proper meal made with with a small number of simple, ideally grain fee, ingredients while you are in recovery. Whilst I seem to get away with the occasional grain-based or sugary gluten-free alternative, anything more than a couple of times a week seems to get me somehow. Maybe this will change in time, or maybe I will manage to narrow down the culprit, but for the moment I am just happy to have something healthy and safe to eat.

Oh dear, that is a large weight loss in that time. My friends and family are noticing my circa 25 lbs weight loss, and either complimenting me or worrying about it. It would be odd for me to lose much more, as our family tends to the well-padded side, even the more longstanding celiacs among us. Only time will tell.

I hope you get a handle on your weight management soon.

Hi Irishheart. You are quite right. I had been taking digestive enzymes following a suggestion from Roda, and it helped significantly. Once the course ran out I didn't get a new one, as I was much better, and by then didn't really notice the difference in not taking them. However, things have gradually got worse again, following a few probable glutenings from CC (the symptoms are for me a bit different to the pain of poor digestion - the biggest clue being a migraine and worsening brain fog). I bought a new course last week, and have now added some probiotics too (and Bs, Calcium, Magesium, D, C and Iron, so I think I am now covering all my bases!) Anyway, the pain and gassiness have reduced again significantly, so they really do seem to help. I won't really know how much better I am until after I eat my nice juicy steak that is waiting for me at home tonight. I agree steak is a great for our recovery, but it is quite a tough food to digest. I have to steer clear when I am under the weather.

I had significant problems with inflammation too. The only way the docs measured it was via a sky high ESR, but I felt it throughout my body. Not only was my digestive system up the creek, but I could barely move because I was so stiff and sore, and was very overweight too. It is not a straight line recovery, and even though I still haven't summoned the energy to start stretching or exercising, I can sometimes feel the tension draining from my soft tissues, and they are sometimes sitting more comfortably around my frame.

I know what I should be feeling with this, as I spent a lot of money on specialist rehab using pilates a few years ago, after a car accident, and got really well after a while. I was also inadvertently eating a healthy gluten free diet too. Then, when I got sick I just couldn't understand why my pilates routine, which had previously worked so well, stopped working at all, so I stopped exercising because I was just hurting myself. I never saw until recently, that it was the gluten free diet that had probably been primarily responsible for my wellness. Unfortunately, having been pretty sick for the last couple of years, it is not such an easy road back to health. I am optimistic though that I will get there, given time and a healthy gluten free diet.

I have also been gluten-free since end of August, and feel better if I stick to getting my carbs from starchy vegetables. However, although I have no trouble avoiding gluten, I do find it difficult to completely stay away from grains. This is sometimes due to the convenience of some grain-based foods when I am pushed for time, and sometimes because I really miss my carbs. I seem to do ok with them if I stick to eating only a couple of grain-based meals/snacks a week, so I suspect, like Irishheart says, it is a problem with digestion still. I also have trouble with too much fat, and too much sugar, which I think probably supports this idea.

Wow you seem to be doing everything right, and you are getting some really good advice from Irishheart and all the other posters above.

I know what you mean about being hungry all the time though - I went through a short phase of this too - and I am convinced it is your body telling you that it is ready for the healthy food that you are now giving it, and it wants to catch up with all the nutrients it had previously been missing while you were sick.

You might find yourself hungry until you find the balance of protein, healthy fats, veggies and good carbs that is right for you (and what is right for you now may not be the same as what is right for you in a year or so's time once you have fully recovered). I tend to lose weight when I am eating a strict version of what feels good for my body. I counteract this by chopping up into small pieces some of my starchy vegetables such as sweet potatoes, potatoes, beets, (can also be done with onions, carrots, squash, pumpkin, anything really) basting them in olive oil, maybe adding salt,garlic and some herbs, and baking them in the oven for 30-45 minutes. It tastes great and is very filling. I have to be careful with quantity when I do this as I find it difficult to digest too much fat, but it may not be the same for you.

I also find it helpful to have a couple of safe treats, something with as short an ingredient list as possible. My personal favourite is a bag of Thai sweet and spicy tortilla chips by R W Garcia.

Immersion by whatever method you can cobble together is absolutely the best way to go. As Kjas said, listening as much as possible to native speakers to pick up the patterns of the language, will help you most. Supplement that by learning some of the basics from more formal teaching materials, but don't get too hung up on that. Just use the materials to crystallise your understanding of what you are hearing.

German is a good language for English speakers to learn as the root vocabulary is similar, and the grammar, although more like Latin than English, is very regular (unlike English!) with straightforward rules.

I learned to speak and write German through a mixture of immersion in the local community and school lessons after moving to Germany at 15. I did have to make the effort to mix though, as I was attending an English speaking school and lived on a military base with my parents. It was a crash course as I covered in 3 years a course normally taken in school over 6 or 7 years, with the first year of lessons being after school. It was a lot of fun and very rewarding.