UKGail

Yes. I was at least 155 lbs and in 5 months have dropped to maybe 130 lbs. I am 5'4", and my pre-illness post-children weight was about 125 lbs, so I am not worrying about the weight loss just yet. I seem to feel symptoms very quickly and one of the earliest is nausea and loss of appetite. I will eat through this, but not as much as normal. If I've really copped it then I get a migraine and am completely unable to eat anything for a day or so, and then cannot eat all that much for a few days afterwards. My weight loss is therefore somewhat erratic, going in fits and starts. As I love food and eat well most of the time, I suspect that my weight loss may well stabilise once I get back to my skinny normal weight, which would be in the range 115 to 125lbs. Any less would not be good. My weight had ballooned in the last couple of years while I was unwell, until going gluten free.

Very interesting information, thank you.

Hi. I hope you are feeling better today after your meal. You have such a lot to deal with at the moment, I admire how you are putting your friend first when you are in equal need of support. However please do take every possible minute to rest and eat that you can squeeze out of your day. I'd bring over something for you to eat if I were a bit closer to Black Hills...(had to look that up on google, it does look beautiful!)

Bartfull - don't give up please. You tried something very new when you were stressed and under great time pressure. Perhaps you need to be kinder to yourself and stick to the things you know can work when you are in rush so that you can have some breakfast, plus some left over as food to go for lunch? Then try the new things maybe at the end of the day when you might be more relaxed?

Maybe also only try something new when you also have an emergency back up handy in case it doesn't work?

I agree quinoa is a bit funny, but it is also very bland. I find it ok as long as it is buried under something tastier. Perhaps you could make simple soups with your safe vegetables (are fresh herbs/salt ok as flavouring?) and then add in the quinoa once the soup base is made? Something like this is also freezable for a quick meal when you are rushed. Although I wasn't as poorly as you are, my system was also in overdrive at the beginning, and I ate lots of simple stuff like this for weeks (plus my mainstay of rice, chicken and veggies), and it was very soothing. I was much better afterwards.

I think you are ok with bananas? Maybe make sure you always have a supply of these, and any other portable food you can safely carry round with you to make sure you don't completely keel over with hunger if you are caught short?

I hope you feel better soon.

The only thing I would like from a gluten free restaurant is to know that the premises are completely gluten free, with straightforward fresh food prepared on site. If I was sure it was safe, then I would visit regularly if it were reasonably close, and occasionally as a treat if it was a bit further away.

As the above poster says, I think the trick will be to make the food delicious without it being obviously gluten free, so that celiacs can meet their family and friends there without it being a big deal.

On pizza bases, in the UK there is a gluten free brand called isobels which sells amongst other things a pizza base mix. You just add egg and water to it, part bake it with your own tomato paste, and then add the toppings just before the end. I have very picky non-celiac children who are grumpy about being deprived of their gluten treats because I can no longer cook them. They both say that this is the best pizza ever, better than the pizza made by our decent local pizza restaurants. The mix is made from cassava flour, with added lactose powder. Obviously the lactose powder will be a problem for many, but it might be worth experimenting with variations on this recipe.

Weluvgators - thank you for responding. I am sorry you have such a challenging situation. My reactions are not as pronounced as yours, but it seems to be in the same ball park. I guess you both have a severe wheat allergy as well as/or instead of presumed celiac? I am suspecting that this applies to me too. I am intending to try to see a celiac specialist to see if he will check for possible other causes of digestive problems (alongside the obvious gluten sensitivity), so will ask for allergy testing at the same time. I hadn't been any real hurry to do this as many of the symptoms, like the rashes and hiving have settled down on the gluten-free diet, but it really annoys my husband and kids that I can't bear to be anywhere near gluten being toasted, boiled or oven-baked.

Marilyn - did you get any allergy testing done at any point in your journey? You mentioned a skin issue. When I was seeing the rheumatologist, he was careful to ask about skin rashes that might indicate psoriasis. I think it can easily look like ezcema, in small patches anyway. There is a version of psoriasis that goes with arthritis and fatique. You might want to bear this in mind if the problem worsens. When I was unwell I also had little itchy spots all over my scalp, which have also pretty much gone with the gluten.

I finally started on the road to twigging to my gluten intolerance when my physio pointed out to me that having 2 frozen shoulders (one with bone loss) in as many years is not normal, and probably indicates an underlying inflammatory process. Anyway, after lots of blood tests which did indicate a high level of inflammation, but no obvious cause for it, a gluten free trial diet resolved my chronic headaches, the frozen shoulder released and various nagging aches and pains pretty much went away.

Some years ago I struggled with rehab from a car accident due to persistent inflammatory responses on trying to exercise. I took prescription level anti-inflammatories and pain killers for well over a year. It only really resolved after many months of gentle physio-led pilates and a microbiotic diet which happened to be, you guessed it, gluten free.

The MRIs from the car accident showed that I have something called Scheuermann' disease, which is a condition where the end-plates of the spinal vertebrae don't develop properly. It can cause curvature of the spine, and may cause back pain, or may be symptom free. It develops in teenagers during the final stages of growth, and is often seen in athletes, leading to speculation that it might be caused by exercise-induced oxygen deprivation in the body tissues. Now I am not especially athletic, and did no more running around than an average teenager. I do sometimes wonder if underlying systemic inflammation might have had a hand in the development of this condition too.

yes, thanks Skylark. It's not wildly helpful on non-celiac gluten sensitivity, but at least it acknowledges its existence. Hopefully it might help reduce the number of GIs telling patients who have had a negative biopsy or blood test to carry on eating gluten...

What still annoys me is the idea implicit in that black and white approach that one day you are fine to eat gluten, and the next you are very ill with malabsorbtion et al and have to avoid it like the plague. Our bodies tell us that you don't get there overnight.....

Sorry about your thyroid playing up. My celiac aunt became hypothyroid 2 years ago, some 8 years after her celiac diagnosis, and didn't think to mention it to anyone else in the family. We only found out about it a few weeks ago when her celiac sister's adult son was diagnosed as very severely hypothyroid. He is now being tested for celiac too. None of them even know what Hashi's is, so I guess their doctors haven't even tested for it.

weluvgators - wow, that is very interesting, thank you for sharing your story. The symptoms you list for your daughter mirror mine, including the hypermobile joints, but muscle cramps for me rather than restless legs. In my twenties I hardly had an uninterrupted night's sleep due to calf muscle cramps in the early hours.

I'm going to give what you said some thought, as it has strong parallels to my story. I have had peptic ulcer/stomach acid issues on and off since I first fell ill in my twenties, and it had been worsening. The symptoms vanished within a week or two of going gluten free, and recur in a mild form for a few days with exposure to trace gluten.

I haven't regularly supplemented with B12, as I wanted to focus on getting a clean and steady diet first, before adding in supplements with multiple delivery ingredients, and have only just started adding in calcium, magnesium, D, and probiotics. I'll add in the B group now too. I hadn't focussed on the B group as my iron level, although lowish, was within the reference range. My great-grandmother had pernicious anemia, and it is her grandchildren and great-grandchildren who are riddled with celiac. We suspect it was also present in at least 2 of her 4 children too, but never diagnosed while they were living.

I looked up zyrtec, and it seems it is regarded as helpful with inflammation of the airways, and calming down itchy skin, both of which are problems for me, so I shall give this a try.

Would you mind sharing whether your daughter, like me, also had negative tests for celiac antibodies and biopsy?

It sounds like you have a good handle on her condition now, but it must be hard work for you to manage it. I am so bored of cooking and trying to keep the risk of cross-contamination from our gluten eaters to a minimum.

Hi Marilyn

I'm 47. I first fell ill in my early twenties. The docs just thought it was post-viral fatigue, but the symptoms were much more extensive than simple tiredness, and were pretty much identical to what I went through last year, apart from the hives which were new. After muddling through my twenties and thirties, I started getting more severe problems when I was 44.

I have always been prone to a bit of ezcema, but nothing bad. However my skin has always been sensitive to touch. If I scratch anywhere I come up in welts. That hasn't changed since I have been gluten free.

My face was burning really badly last summer (a different issue to the hives which came and went, and have now seem to have gone for good). It has pretty much gone away now, but returns in a mild form if I do something to upset my digestion. This could be a reaction to trace gluten, but also seems to happen if I challenge my digestive system by eating a large meal with a high level of fat. It's a bit warm this morning as I worked late yesterday evening, so didn't eat until very late last night, which is never a good idea. My mother also has something like this. Her doctor says it is rosacea, but she has figured out it is controlled by being gluten lite and dairy free. She has never tested for celiac, as she is otherwise quite well.

That's weird re your reaction to anti-histamines. One of my problems has been bad sinus pain and a stuffy nose since last year, and it wasn't improving with the change in diet. Another poster recently explained how zantac (an H2 anti-histamine) was helping with her severe wheat allergy. I thought I would give it a try, and sure enough it helped significantly with the drippy nose, to the point where I now only need to take a dose occasionally. A steriod nasal spray has helped reduce the sinus pain, and I still need to take this daily. I'll have to see my GP about this before too much longer, as I don't think you are supposed to self-medicate with this on a long term basis. I probably ought to see about food allergy testing, as I suspect this might be why I still have some problems, and I also seem to react to airborne gluten (10 days sick after going into a hot bagel shop to buy a hot bacon bagel for my daughter - not my best decision!)

Genetic testing has also been recommended to me to try to help with a diagnosis. However, whilst I have no major objection, I don't see the point of making a trip to the doctor specially for this. Half my mother's family are diagnosed celiacs, so I have always taken for granted that we are all in one of the at risk groups.

I tested negative for antibodies, and also had a negative biopsy after a gluten lite diet. That was 2 years ago, and the GI said to carry on eating as normal. I took his advice and as a consequence my health continued to decline, and I ended up seeing a rheumatologist for a suspected connective tissue condition. The rheumatologist suggested I go gluten free, and that reversed many problems, and I am now much, much better. However I could have saved myself 2 years of pain and struggle, and my health is now much more fragile than it was 2 years ago, if I had stuck to my instincts and not listed to the GI.

I also have an unreliable thyroid, but not to the same extent of the other posters above.

An international group of leading Celiac doctors have just published a summary of the spectrum of gluten sensitivity. This includes a non-celiac gluten sensitivity, which has similar symptoms to celiac, and which responds well to the gluten free diet. There are currently no tests for it, other than by response to the diet, and problems with reintroducing gluten. Someone recently posted a link to the report, if you can find the thread.

As others pointed out, your tests were not properly carried out, so they may well have missed a celiac diagnosis anyway.

Bartfull, I am so pleased you have made a good start on your new diet. Having some vitamins made up for you seems like a good idea. Attagirl re the coffee. You need to have something you love to see you through this process! I can't imagine filling my small city freezer with half a bison (not a meat on sale in UK supermarkets). My husband grew up on a cattle farm though, and they used to slaughter a cow once a year for the family freezer.

Best wishes

I have trod your path too. Of the rheumatological antibody, thyroid and celiac tests I had done last year, the only adverse findings were very high ESR, high IgM anti-cardiolipin, borderline high TSH, borderline low RBC, and a couple of other very minor funnies. The rheumatologist, who was a lupus specialist, wasn't minded to diagnose me with any autoimmune condition, and he thought that it wouldn't be celiac because of the negative antibodies (TTG was well below the reference range).

Because of a strong family history of celiac disease, he asked me to trial a strict gluten free diet. Within 2 months the blood abnormalities had more or less sorted themselves out, and the photosensitive rashes, hives, headaches, and joint aches and pains, and abdominal troubles had also either resolved or markedly improved. The rheumatologist was accepting of this, but quite bemused. I am pretty sure the idea that gluten could influence the development of his specialist condition was not something he had any experience of. He said I didn't need to go back, unless things took a turn for the worse, but that he would like to know if I managed to get any sort of medical confirmation of a gluten sensitivity. As we all know, this is unlikely now that I am happy being on a gluten free diet.

By the way, I developed a photosensitive rash and hives at the same time as a significant worsening of what had previously only been minor or intermittent abdominal troubles, and it was after the original blood draws. My guess is that I was perhaps on the slippery slope to developing celiac and maybe also lupus or similar, but caught it quickly allowing a fairly rapid recovery. I still have digestive, fatigue and brain fog issues though, so it isn't entirely a bed of roses.

I hope the gluten free diet helps you too, but don't be surprised at your rheumatologist not accepting the connection.

Our cats have always been on a grain free food as one of them gets bloody stools if he eats any food with wheat added to it. Ironic that I realised I had a celiac cat before I understood it was my problem too!

Irishheart - I have not been able to find a wheat free chicken food, relying instead on my husband to feed them. Their food however is kept in a cupboard at the back of the kitchen, that I can't go near, which is a problem in itself. Did your friend find a suitable alternative food? If so, I would love to hear.

We also have a chincilla, whose kibble contains wheat, and all the brands on the market contain wheat. I try avoid going near her cage, as I feel a sort of wheaty haze around it. Does anyone anyone have any experience with alternative food for chinchillas?

I should perhaps add that I suspect I may have a wheat allergy, rather than, or perhaps as well as, celiac.

Oh gosh, the advice seems a bit of a mixed bag. I wouldn't touch the wheat grass or barley either.

The basic thrust of her advice, that your system is in hyperdrive, and temporarily needs a small number of very simple foods to help it calm down seems reasonable. This approach helped me when I first went gluten free, when I reacted to many foods (I would get hives and abdominal swelling - like an allergic reaction). It only took a few weeks for it to gradually calm down though, and I don't need to worry about things as much now.

However, and I am no scientist, doesn't the body need a fair bit of protein each day to keep going? If it was me, I would be looking for some high quality organic chicken or something to add in as quickly as possible.

On the coffee debate, I gave up caffeinated drinks years ago while I was pregant. I had a horrid withdrawal headache for a week! I now only drink rooibos tea and maybe one cup of decaffinated instant coffee a day (sorry, coffee lovers!). If I ever have proper, brewed coffee, say in a restaurant, I am wired for hours and hours....I did have to give up both these drinks, and drink just hot water for a few weeks when I first went gluten free. Now,if I have a setback I have to go back to this approach. However that is not to say that I neccessarily agree with the nutritionist's advice. If you are still a caffeine/coffee addict, then giving it up now, might be one too many insults for your body to cope with all at once. I would maybe experiment and listen to what your body tells you to do.

Best of luck. Please let us know how you get on.

The banana and blueberry smoothie sounds lovely.

"Birth defects? Not likely. Screamy, colicky baby with ear infections, reflux and funky rashes? Quite likely. Don't worry that you have done permanent damage, the majority of us were un dx celiacs eating gluten thru pregnancy. But do yourself and your little one a big favor and go gluten free from here on out. You will both feel better! "

Yup, that ties in with my experience. Add in a severe lactose intolerance with one child too, and I couldn't manage to breast feed her (she was so tiny and I was a hopeless, exhausted first time Mum). Both my children were unusually small babies (just six pounds nothing each time), even though I am average size at 5'4", weighing 125 lbs before pregnancy and gaining about 25lbs during pregnancy. Second baby had sleep problems and recurrent ear infections.

Be extra vigilant for iron deficiency during pregnancy, even after you go gluten free.

Be careful of Trufree biscuits. Although they are a tasty treat, the couple of types I tried contained lactose powder. There is plenty of dairy free stuff in Sainsbury's to choose from though. The other major British supermarkets have similar free-from ranges, but they don't seem quite so extensive.

There also seems to be Tesco superstores in the outskirts of Dublin, so they might deliver to Strawberry's address. I am not very familiar with their range, and their labelling seems ok for gluten and dairy free, but am not sure about soy free. I am not very familiar with hunting down soy in ingredient lists, but they might be another thing to try.

Gemini - I defer to your experience on feeding up a very poorly underweight person.

Sainsbury's are really good on labelling allergens, and their free from range goes the extra mile, with the main allergens being avoided prominently displayed on the front of the product (eg, wheat free, gluten free, dairy free).

I attach a link to their website below. In the allergens area there is also a long list of products which are free from X allergen. There is a soya exclusion list, although it would also need to be cross-referred to the gluten free list, and any other allergens Strawberry needed.

Sainsbury's also do on-line shopping, so Strawberry could choose a bunch of stuff her boyfriend could buy for her, if he is able to get there, as I guess they won't deliver over the border to the Republic.

The free from range includes not just a large range of goodies, but also a decent selection of ready meals and cooking sauces or soups which can make up a quick meal. I would expect the majority of them to be soy free as well as gluten free, but they would need to go to the largest possible store, rather than a smaller city site.

Open Original Shared Link

You don't say if you are gluten free or not, and if you are, how long it has been. Some see an improvement, but not neccessarily a resolution, to their symptoms after going gluten free.

Its also the starting place for pilates. My transversus stopped working properly after I hurt my neck and back in a car accident. To recover I did rehab work with qualified pilates trainer to rebuild my core muscles (after spending lots of insurance money on chiropractors). It took while, but worked a treat, and worked much better alongside a gluten free diet.

This thread is a good reminder that we have to look after our bodies via exercise as well as diet.

OMG Bartful - you have it tough! I hope the nutritionist can suggest a way to get the calories into you without filling your stomach up too soon.

I suspect the answer lays somewhere in high fat foods and as many eggs as you can bear, and working on the range of veggies and other foods as a secondary target. That's all a bit over my head though.

Can you tolerate baking any of your veggies in oil? (I think the smoke point of butter is too low for this approach). You might be able to do this for carrots, beetroot, maybe cauliflower, really any sort of starchy root vegetable is good? Rice bran oil may be the best bet, if you can find it, if sunflower or other vegetable oils are no good for you. (Can you tolerate products from plastic bottles, or is it just cans that are bad?) Its not the healthiest way to prepare food, but it should fill you up, and probably delivers more calories and nutrients than filling up on white rice. I lose weight if I don't have several main meals a week using a large portion of baked veggies. (I am trying to more or less avoid grains as it seems to help me with the brain fog and fatigue). However for me it is a balancing act as I can't handle too much fat in my diet.

Strawberry - I don't suppose your boyfriend would drive up to Northern Ireland for you? There are Sainsbury's supermarkets in various places there, and they have a great range of gluten free food, as well as being a large well-stocked supermarket. The nearest to you is Newry, but the largest one is likely to be in Lisburn, and it is just off the motorway. Sainsbury's do a very nice rice and buckwheat porridge too, amongst other things. Yeo Valley do lovely organic, gluten free ice cream. It is quite expensive though. I can't vouch for how safe it is though as I can't do dairy.

I hope you find some easy high-energy comfort food until you get over the worst of your illness. After you are over the worst of it, I really think you need to cook nutritionally dense foods to help you fully recover, and keep the gluten free goodies to a minimum.

Hi Bartful

I'm happy to hear you are having a better day today. I really felt bad for you yesterday.

Shame about the seafood. Living in a small island like the UK, we forget that a lot of the world can live a long way from the sea. Do your supermarkets not stock decent tinned seafood? For me, that has become a real store cupboard staple for a quick and healthy lunch (I usually dash home from the office for lunch as I am not too good at organising food to go which I can tolerate).

I know what you mean about almonds. I am having some problems with them too. I can't decide whether it is due to cross-contamination or to their high level of fat.

If dairy doesn't bother your digestion, that's great, I envy you as I miss it badly. It just niggles with me that you are grappling to find triggers for your psoriasis, and dairy is such a common allergen, especially for celiacs. It just seems too good to be true that you tolerate it. Maybe I am just jealous? Dairy reactions can be weird too. I have a colleague who happily takes milk in her tea, but can't have any trace of butter in any food or her throat swells up badly. Work that one out if you can!

I hope your appointment with the nutritionist goes well, and that she has some good suggestions for you.

Hi Bartful, I am so sorry you are feeling so rough at the moment. I could be about to write a complete load of tosh, as I am no scientist, am still fairly new to this life, and don't suffer from psoriasis, but I did just want to offer the few thoughts that I can muster from your posts, as well as my moral support.

Firstly - you didn't mention whether you feel you are healed inside from the gluten damage or not. I am working on the assumption that gluten has been an aggravating factor in your psoriasis problem, and that if you have not healed up, then you might still be more sensitive now, than you might be in future, once your gut has healed properly.

I gather you are struggling with your vitamin levels, which might mean you need to gain some weight too. Looking at what you say you can eat (white rice, chicken, pork, steak, cauliflower, broccoli and eggs), although limited, this is, I think, a complete diet. The egg boxes from my supermarket say that each egg contains 25% of the RDA of Vitamin D. I would suggest eating lots of eggs if you tolerate them well. I do. I eat 3 eggs for lunch or dinner on many days, scrambled in a non-stick pan with no added fat. I suggest eating it with some veggies or with any further meat or fish protein that you can tolerate. Failing that, mixed up with some white rice, but this would not be as nutritious for you.

What worries me is the dairy thing. I would be strongly tempted to take this out for a few days to see if that helps, as it is such a common allergen, and known problem for unhealed celiacs.

There is no fish in your diet? Oily fish is great for calcium and vitamin D, and for good fats too, which are also high in energy. If you can't buy fresh, try tinned salmon, tuna, sardines etc. Baked or fried white fish should be good too from time to time.

You don't mention nuts or coconut? Perhaps you don't tolerate them well? If there is any of them you can tolerate, they would be great to add in to your diet, especially coconut, which is also a decent dairy substitute.

When I was diagnosed, I was heading rapidly towards a lupus diagnosis. Luckily it was caught early enough, and the lupus-like symptoms reversed fairly quickly once I went gluten free. For the first couple of months I had intolerance problems with nuts, legumes, nightshades, and sugars. Any of these would cause a flare up of a photosensitive rash or hives, or ezcema. The reactions did die down gradually as I stuck to a restricted whole foods diet. Now I still have to be careful of sugars, too much fat, still have to avoid dairy and can only eat the occasional gluten-free substitute. I am mainly grain free now too, which helps with the fatigue and brain fog. That is a different issue though.

BTW - if you need a cooking oil, I found rice-bran oil to be the least troublesome. It has a high smoke point, so is good for frying and baking. Maybe some baked veggies might be tasty and more filling than boiled sometimes?

I do hope you find something you can eat soon, and that your psoriasis also dies down quickly.

Best wishes

Hi Dani

Doctors like getting you diagnosed as they think that celiacs need to be very strict about the diet to avoid further health problems. They currently think that people with non-celiac gluten sensitivity may not need to be quite as strict, and may even have a level of tolerance to ingesting small amounts of gluten. However I haven't managed to find any research to back this up, and many of us think that doctors are simply missing many celiac cases because of problems with the testing (or simply not testing when they ought to). Given the wide range of symptoms experienced by diagnosed celiacs (from near-death to completely silent)you could argue that if you have observed any form of gluten sensitivity, strict avoidance is less risky.

A formal diagnosis also helps other family members get tested, as medical guidelines encourage the testing of first degree relatives. Celiac disease is strongly heritable, and one day you may need to have your children tested. A diagnosis also helps to stop other family members thinking you are simply odd to avoid gluten for no reason validated by a doctor!

As for the ongoing stomach aches etc - well, it just takes time to heal. Until you do, it may continue to hurt for a while.

Continuing to consume lactose won't help you heal. Lactase to digest the lactose is produced in the tips of the villi. If these are damaged by celiac, you won't be able to digest it. I don't know if consuming it will actually set you back in healing, but I personally feel it is likely, albeit not the same extent as gluten ingestion. I tried some hard cheese for the first time yesterday (after 5 months gluten free), and it just gave me stomach ache, gurgling and bloating. Not as bad as a gluten reaction, but not helpful either. I'm going to continue to avoid it for a bit longer. I agree it is tough for you though, if you are trying to eat while travelling, and dairy is in most of the local food. I hope you enjoy your trip despite your discomfort. It is a fascinating area of the world.