UKGail

This is really good advice from Sylark, all of it.

You need to find a way to protect your health, otherwise you may simply not be well enough to get through such a rigorous college course, or you may find yourself limping through it with lower grades than you need. If the only way is a modest student loan to be able to buy safe food, then that is what you might need to do.

You might find that if you kickstart the process, your family may, in time, learn from you and your boyfriend and improve their own eating habits.

I know this all sounds very tough. You are in a tricky place, but it is not impossible by any means. You are young and you will get through it. I am a middle-aged wife and mother with a busy professional job, and a husband who works really long hours on top of a long commute, so who can give limited support at home. I don't cook very well either, and my kids are fussy eaters. I found that I can't cook or handle gluten foods for the family any more without making myself sick, so during my recovery have had to refocus not only my own particular very strict dietary needs, but also adapt what I am feeding to my grumpy gluten-deprived family. None of this is easy when you are feeling tired and unwell, but it can be done, and the effort is worthwhile in terms of improvements to health and energy levels.

You can do it, and your boyfriend sounds like a great support, albeit he still has to learn to stand back and watch you making mistakes and not simply take over. It will be a learning process all round.

Hi- I'm so sorry you are having a hard time with your famiy. It is tough enough to go through this change to gluten free eating anyway, without throwing in lack of support from your family, particularly if you have to share a kitchen with hardened gluten eaters.

I'm not sure I can give you any particular advice about handling your Mum, other than to try to stay sweet with her, and to gently keep trying to educate her. As you know Celiac is strongly heritable, so I wonder if her attitude changed because she started to realise it may be a problem for her too? Just a thought.

The main thing I wanted to say though, is that with this disease, you really do have to learn how to cook. Even if your Mum was supportive, you wouldn't spend your whole life living in her house, so you will be moving out at some point to make your own way in life. With celiac you can't rely on eating just quick-fix processed foods, you will need to eat mainly simple wholefoods prepared from scratch. Why not start learning now? You never know, you might find you do well enough to prepare some meals for all the family and take some of the pressure off your Mum. I bet that that would go down well!

Good luck!

Thanks for the info Bubba's Mom - no wonder I am confused, when even the doctors don't understand it!

Please forgive my ignorance, but why isn't DQ2.2 the same as DQ2? Isn't DQ2.2 just a subset of DQ2?

Sorry if this is a dumb question, but I understand very little about the HLA typing, other than the fact that there are 2 key groups researchers say are POTENTIAL celiacs, with celiac being uncommon (but they don't know uncommon) outside of these groups?

Thanks

IrishHeart - Wow, its one hell of a story. I don't know whether to envy you for eventually finding a diagnostic prince, or to commiserate the fact that you suffered for so long. I'm pretty sure I've had it since my teens or early twenties, but maybe on a "sub-clinical" level until 2-3 years ago. My health was just starting to cascade downwards in a fast, accelerating way similar to how you describe when I went gluten free and put a stop to it. I guess I was luckier than you in that we have known for 10 years that we have celiac in the family (there were 2 cases until this year, now, including me, there are 6, with another probable case still in diagnosis), we just had no idea that gluten intolerance could have such varied presentations, with widely differing levels of sensitivity.

I really, really wish that the doctors who write the medical papers summarising clinical research/experience and who have a hand in setting the clinical diagnosis guidelines would acknowledge the imperfection of the blood tests and the difficulty of obtaining a successful biopsy. Then maybe clinicians wouldn't give such black and white answers when they can't tick all the boxes that their guidelines indicate. Then maybe people like you and I (and others in my family) wouldn't go undiagnosed for so long, destroying our health in the process.

I know you have written about yourself many times on this board, in snippets, helping people with their journey. Had you thought maybe about posting a full account of your seronegativity and symptom history in the pre-diagnosis section for others to see and learn from? Maybe myself and others who have had similar experiences could add our stories it to reinforce the message? Maybe if Admin thought it was a good idea, it could even be pinned to that forum, so it didn't disappear under the weight of new posts? What do you think?

BTW - I think you and Dilettantesteph are saying the same thing about the tests. You are picking each other up on semantics!

IrishHeart, like you I am seronegative. I was put on a gluten free diet by a rheumatologist without prior referral to a Gastro, and it is now probably too late for a successful biopsy without a lengthy gluten challenge. Would you mind if I was nosey and asked if you managed to get a positive biopsy for your diagnosis, or did your Gastro diagnose you based on your extensive and severe symptoms? Just curious, if you don't mind.

I have been reading this thread with interest because I just cc'd myself last weekend while cleaning out the bin that my sheeps' alfalfa pellets were in. I developed muscle and joint pain and stiffnes and am still having some wild mood swings - usual symptoms for me when I get contaminated - but all the GI symptoms are missing...so I am getting different reaction to breathing in the offending gluten as opposed to eating it. Maybe that is the case with you too.

I think this is true for me too. Airborne fumes normally inflame my sinuses very quickly, followed by migraine, joint and muscle pain. A mild stomach ache will follow if I haven't gotten away from the contamination quickly enough. I only seem to get a big GI problems if I have managed to ingest a bigger dose, which might be difficult via airborne contamination. I spent yesterday evening at the mall with my kids, and we had supper at a popular restaurant, which is supposedly ok for gluten free food. I just had some spicy fried rice, which seemed the safest thing to eat, but my children were eating large portions of smelly garlic bread (they don't get to eat hot gluteny foods at home any more). This morning I woke up a tell-tale headache, and am achy all over, but my stomach is fine. So I suspect the fumes from the kids garlic bread, and maybe other minor environmental CC, rather than any contamination of my rice. I can't keep anything in my stomach for a day or so if I get a dose of contaminated food. I do wonder if the airborne reaction is just a lesser reaction due to a smaller dose, or whether it is an allergic reaction rather than a celiac one. Mood swings can be a problem for me too, but it has't happened today.

The food industry needs to consider so many changes, but they sadly don't care as much about people's health as much as increasing production ;-(

Hi Dani thanks for pointing this out. These pellets look great for all small animals. It seems that importing this into Europe is a bit of a pain though. The UK importer quoted me a lead time of 3-6 months to delivery because it is manufactured to order and they need to gather sufficient customer orders before they can approach the manufacturer. Given this I think I'll approach our local pet food shop (who are quite helpful), our exotic vet, and maybe also our chinchilla's breeder to see if I can garner any support/combined orders to hurry things along a bit. Have you looked into ordering yet? I see they don't list an importer for Sweden.

Ah - see I picked up the wrong post from you - oops! I meant to thank you for the link to Zupreen pet foods. Thanks to the OP about this too.

Best wishes

Gail

Hi Dani, I wouldn't worry too much about the amenorrhea coming back while you are on the gluten-free diet. I'm a fair bit older than you, I think, (47) and early menopause is more where I am heading if I am not careful, but I've had my period every month for 6 months, bang on time, since going gluten free, even though I've had ups and downs along the way. My last period even kept going through a nasty glutening which kept me either in bed or the bathroom over the weekend.

My feeling is that amenorrhea is a symptom of full-on untreated celiac rather than something which is sensitive to the day to day ups and downs of complying with a strict gluten-free diet. Maybe someone else has another perspective though?

Fascinating story about your bunny. I hope you can find a way to deal with it. We have a WE chinchilla in a cage, and I can feel the slightly wheaty cloud around her cage when I walk past (I suspect I am wheat allergic). I don't think there is anyway to manage this for a chinchilla (I did look for alternative pellets), so I just try to steer clear. It's not good for her though, as I was the main person looking after her and bringing her out for cuddles and treats etc. My poor old husband has to do it now, and he doesn't really have the time or the inclination. It's an issue I don't like to think about too much as it is upsetting.

HGMama - sorry you are having such a bad time of it. You can have a positive biopsy with negative antibodies, it is just not the norm. I hope it is positive for you, to give you a firm diagnosis of the reason for your symptoms. If however it is negative, and if your doctors do not find any alternative explanation for your symptoms (other than "IBS"), then please do give the gluten free diet a strict and lengthy trial anyway, you do seem to be a good candidate for gluten intolerance.

Oats - perhaps someone will correct me if I am wrong, but I don't think a candida problem is a cause of amenhorrea, but there are a number of people who post on this board who have, or have had, candida as well as gluten intolerance. You may find you need to treat both conditions.

BTW - all your symptoms other than the white tongue and tonsils are very like mine. I was largely ok eating gluten for 40 odd years, but every few months I would get a really bad migraine, vomit or be nauseous, have bad backache and stomach pain, and diarrhea. This would last for one or two days, during which I couldn't eat a single thing (and would have to stay in bed or in the bathroom). Then I would get recover, but it would take up to a week for me to recover "fully". Now that I am gluten free I notice that this is what happens to me if I accidentally come into contact with gluten, except that I recover much faster and more effectively as I now know not to go back to eating gluten again once the worst is over.

I've cleaned my kitchen as best I can but there are still gluten crumbs stuck between the range and worktop, and I can never trust the handles or towels as I have gluten eaters in the house (albeit they are restricted to a modest amount of cold, packaged gluten products). I give the worktop a quick freshener before I use it, and then don't place things directly on the worktop or range unless they are sitting on a chopping board, plate or paper towel. It seems to work ok, as long as I do the cooking. At the weekend, when my husband and kids use the kitchen (they ususally buy gluten bread at the weekend and make sandwiches/rolls for lunch), I start to notice the difference until the kitchen has been cleaned up thoroughly.

I have my own new dedicated pans for strictly gluten free food, but I will now also eat food cooked with our old stainless steel pans now that they have been washed a number of times. I no longer cook gluten foods any more and I will often use these pans to prepare food for the family which I won't eat because it doesn't pass my strict no-food-with-possible-CC rules. I figure any trace CC will have been removed by the next time I use it.

Sadly I no longer use our well-loved enamelled creuset cooking pots as they are very scratched and I used to cook many casseroles using wheat flour.

I never touch the kitchen towels, unless it is fresh out of the drawer, otherwise I use paper towels.

I have to clean the silverware drawer regularly as it seems to breed crumbs of uncertain provenance!

I am OCD about cleaning the dishwasher filter every day, even though we have miminal gluten in the kitchen, and I rinse any suspect plates before loading them.

Jestgar and Curlyfries - thank you very much for your suggestions. The cooler looks like a good idea, and not something I've seen in the UK. I'll give the indy support group a try too, thank you.

I am still having to think about whether I can go or not (or at least travelling any further than NY) as I am still struggling to eat anything out of a packet (I have a very, very limited list of items I am ok with). I tried peanut butter again on Friday and spent the whole weekend with all the usual lovely symptoms of a full-on glutening. It was a new jar, so I can't blame anyone else for double-dipping.

It feels a bit like Hobsons choice, do I go and risk ruining the holiday for the rest of the family if I get sick, or not go and miss out, and make my poor husband do all the work looking after the kids? They are teenagers so we only have a few years left of them agreeing to go on holiday with us anyway.

Thanks so much for responding ndw. Cooper's Hawk looks great, with yummy food. I seem to be ok if I am in a room that is large and well ventilated, so this might be ok, if you trust them. The deli looks more problematical as its menu is bread-based. We have a small cafe in our neighbourhood which does lovely fresh home-made food, and its extensive selection of home-made cakes are mostly gluten free. When I found out I was gluten intolerant I thought "great, I still have a restaurant nearby to go to". Wrong! I went there to buy one of their gluten free cakes, and felt like I had been hit by a wall of flour as soon as I walked through the door. I had a similar experience at our local small deli, when trying to buy a bagel for my daughter. I realise this is not a typical celiac reaction, and may be an allergy instead.

Thank you for your advice. I have printed off the details for Coopers Hawk, and will save them for the trip.

Hi everyone. I've been basically shutting between home and work for the 6 months since going gluten free, and have only eaten a couple of times at trusted friends places. I have fairly strong reactions to airborne gluten and gluteny smells (mainly neurological), so am not keen on eating out unless it is in a gluten free place. At this point in time I also still need to keep to a mainly meat, fish and produce diet.

My family have decided they want to fly to New York and then have a road trip to Indianapolis to catch up with family we haven't seen for a few years for our summer holiday. Does anyone have any suggestions about self-catering accommodation in either of these places, and/or any gluten free restaurant/cafe recommendations? For New York we would stay in either Manhattan or in Westchester.

I am also a bit nervous about driving across country to Indianapolis, not because of the distance (we drove 2,000 miles last summer in Europe when I was sick and didn't know why...) but because of the difficulty of access to safe food during a long journey without all the usual picnic supports from home.

Any advice from more seasoned celiac travellers or residents of these places would be very welcome.

Thank you very much.

I was precribed amiltryptaline by a pain specialist some years ago to help with chronic spinal pain after a car accident. I found it didn't help at all, in fact it just made me depressed! I gave it a couple of months, and then stopped it cold-turkey, which apparently you are not supposed to do. The doc wanted me to wean off it gradually with tapered doses. I couldn't be bothered, and it wasn't a problem. I only felt better for stopping it.

With the benefit of hindsight my pain was being prolonged by gluten-induced inflammation, and I eventually sorted it out by a gentle programme of physio-led rehab-level pilates, and also a gluten free diet.

I agree with all the above posters that the logical thing for you to try is to tighten up on your diet for at least a few months to see if that helps. Although your doctors are telling you you have healed because you no longer have antibodies or flattened villi (and well done for that!), I never had them in the first place, yet my symptoms are very clearly alleviated by a gluten free diet.

So sorry you are feeling rough, and not getting the support you need from your Mum. I am in the opposite boat in that I am the Mum and my kids are a bit fed up with me refusing to have any hot gluteny food being cooked in the kitchen. My husband/their dad, is supportive, but the loss of gluteny food doesn't bother him in the same way.

Whilst you need to be sensitive to your Mum, whose kitchen it is, I think you might need to cook most, if not all, of your own food to stay safe, and to start working through your other possible allergies/intolerances in a methodical way. So you get to choose what you eat. Maybe you could have your own cupboard with your own food and utensils/crockery/silverware, so you don't have to share? You wouldn't need all that much if it is just for you.

This might seem to be a bit bizarre to your Mum, as a fellow celiac, but she ought to understand if you explain that it is just a temporary solution while you work out what the causes of your remaining problems are. If you are still sharing family food and crockery etc, it makes it much harder for you to pin down your reactions.

BTW - I am also dairy fee, and like using coconut milk as an alternative. However I am suspicious that has been adding to my ongoing nausea and achiness, and have stopped using it for now. It is hard for me to be sure that this is the culprit, but I do seem to be better without it. This is annoying as I can't find anything else suitable for taking with cereal or tea. I'm still trying to work this out as I don't wish to give up this tasty product for too long.

Best of luck!

If you are celiac, then I don't think taking probiotics or digestive enzymes should mask the issue. My experience of the British medical system, is that they don't bother to test for vitamin levels, so I wouldn't neccessarily expect any help in that area. However it wouldn't hurt to stop your vitamins until after all your testing has been complete in case you have a better gastro doc than I did.

I didn't have a great diagnosis experience in the UK (I had private referrals, but that should make no difference, as the staff and medical protocols are the same). I don't have any celiac antibodies. My GP nevertheless referred me for gastroscopy/biopsy two and a half years ago because of a strong family history of celiac disease. The biopsy only found a hiatal hernia and scarring due to ulcers/excess acid. A pelvic ultrasound found cysts and "pelvic congestion" due to inflammation of blood vessels in the pelvic area, which is also cause of pelvic pain. The gastro advised me that I didn't have celiac, and should carry on eating gluten. Not knowing any better, I did. I had a brief respite from pelvic pain following some hormone treatment, but it returned, and other symptoms continued to worsen. Exponentially so last year, with each month being worse than the previous one, until I finally went gluten free following another set of negative blood tests.

Yes, my problem is definitely gluten, as I am much, much better in many ways than I have been for years. However some problems continue to bother me, problems which I did not have until last year. So if your biopsy comes back negative, and your gastro tells you not to worry about celiac, please ignore him and give the diet a strict and full trial anyway. That will be your best diagnosis, if you don't fit the narrow criteria for celiac disease.

I used to get quite a few colds each year, caught from my children who bring them home from school (where I also work) or from my husband who picks them up from crowded commuter trains. It seems a bit like tempting fate to write this....but I haven't had a single cold since going gluten free 6 months ago, even though my children have been frequently sick with them and my husband had a bad dose of "man flu" over Christmas.

My stuffy, painful sinuses have improved, but they are still a problem for me though.

I remember belatedly reading your last posts about this topic, and not liking it then. To see you coming back a year later with the problems getting worse rather than better is even more concerning.

Other posters have given you some really good advice about ways to protect your food, and techniques to deflect the uwanted attention, and I have nothing to add to them.

What I do wish to say is that as a mother who works in a school and with our local church group which also organises trips away, I am OUTRAGED that this behaviour and the pastor/organisors and your parents are not taking firm steps to put a permanent stop to this outright bullying.

If the behaviour has not stopped now and has indeed worsened, even after you have talked to the leaders previously, I would be seriously considering whether this is a group with which you wish to be involved. Of course, you may be living in a small community where there is not much choice available, in which case your choice is whether to continue to carry on with your church activities or not. You may also be attending the same school as these unpleasant people. This is a rock and a hard place, but life is sometimes like that. You may find however that there are nicer people elsewhere with whom to spend your time.

I advise having another talk with both your parents and the pastor/youth group leader prior to the trip. Ideally your parents should also attend the meeting with the pastor to support you, and also to emphasise the serious nature of the bad behaviour. It is bullying, and any tampering with your food is some form of criminal assault. The trip leader is legally responsible for your health and safety while you are in his/her care. If you are made sick during the trip by the actions of some of the other participants, and he/she was warned in advance that such behaviour was likely, then you or your parents could take some legal action against him/her or against the Church for negligence. Your parents could point this out to the leader in the meeting. Then, in a pre-trip briefing to the participants, the pastor should mention to all that you need to bring your own food with you for medical reasons, and that this food is not to be touched by anyone else. He does not need to make a song or dance about this, but it does put the others on notice that they cannot rely on leadership indifference to their behaviour.

What you are suffering is not normal behaviour and you really need to find some assistance in getting it stopped or getting away from it. I cannot tell you how upset I am at the situation find yourself in.

I wish you all the best, and would like to give you a big hug for moral support.

Pondy

You should definitely go back to your primary doctor about this. There is an autoimmune condition called temporal arteritis which is basically inflammation in the blood vessels supplying the head. It can give you headaches, blur your vision and can affect your hearing, plus other symptoms. It is treated with steroids.

Whilst your symptoms are probably not caused by this, it is best to be safe with any sudden onset of severe headache and vision blurring to make sure by medical review. If left untreated this condition can cause permanent damage.

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I hope it resolves soon.

Best wishes

"As for diet, I find I feel best when I get enough protein and I'm also taking 500mg magnesium (helped with headaches and muscle aches), 2000 mg D3 (helped with fatigue) and 100mg B12 (helped aches)."

Completely agree with this. I've had to completely rebalance my diet towards protein, particularly oily fish, and go grain-lite. I supplement with B vits, calcium, magnesium, D3, iron with C, probiotics and digestive enzymes. For me the most helpful were digestive enzymes (they helped signficantly with fat malabsorbtion), and probiotics. I think the B vits are also helping. I can't say I noticed a difference with D, which I started taking earlier than the others.

I've had no tests for any of this, and have just been following advice on this board and listening to what feels right for my body. Right now it would rather be at home in bed, rather than trying to focus at my computer.

Hi Strawberry

I've been puzzling myself about exactly the sort of problems you describe in your post. I have been gluten and dairy free for 6 months. no cheating, mainly whole foods, just a few packaged gluten free products, grain-lite, no eating out. I am suspicious of soya, thinking it may add to my headaches and joint/muscle aches, but can't be sure. I am also suspicious of coconut, but can't be sure. I wash my hands before preparing or eating, take care to eat or drink from clean places/cups, won't have gluten cooked in the kitchen, but have to allow some bread and gluten treats for my gluten eaters, which I no longer touch.

When I am "clean" after a few weeks of eating wholefoods, with very, very few gluten-free products, I am less tired, ache less including my head, and my digestive system works ok, albeit very sluggishly, and my nausea disappears. When I am really clean, my appetite returns suddenly with a vengence. This happened to me at the weekend (its not the first time) and I was so hungry, even after my usual healthy meal, that I kept going back to the cupboard all day long, and the following day too. I ate my whole stock of trusted gluten-free products (not large, but much more in 2 days than I've eaten in a normal month....). I also ate a small meal out at a trusted place, along with a very rare half a glass of wine. By Monday afternoon I had a headache, am really tired, and my shoulders and arms ache badly. And my face burn is back.

Although I don't think I have helped myself by including a little soy and coconut in my binge, my main suspicion lies with a build up of gluten by eating too many gluten-free products over the last few days. The main reason I suspect this is the change in my digestion. Over the weekend I got really bad smelly gas, some abdominal discomfort and a much, much faster transit time (sorry TMI). I'm pretty sure this is a gluten reaction for me. That reaction is starting to ease off, but the aches and tiredness haven't yet. That seems to take weeks to settle down.

To complicate matters further, I have another sort of reaction, which is an allergy-type reaction to airborne gluten. Whiffs of cooked or moist gluten triggers immediate burning sinuses and my head starts to swim and feel weird, followed very soon after by prickling feelings in my lower abdomen, followed later by abdominal pain and a migraine if I get too large a dose. I had a mild reaction to having to sit too close to plates of moist cookies and cupcakes at a series of meetings last week, so I can't entirely rule out either a delayed reaction to this exposure, or to that exposure adding to the trace gluten load from my gluten free product binge over the weekend.

It is a puzzle, and I would be thrilled to identify a trigger other than tiny amounts of gluten. Having to worry about tiny amounts of gluten contamination is not somewhere I am in a hurry to go. Particularly, as you say, it does not neccessarily lay you flat out, it just makes you feel miserable and lacking in energy.

Sounds like your doc doesn't really think your issues are related to gluten. However, although both you and your doc need to be alive to possible alternative explanations, everything you mention above is very similar to my experience of gluten intolerance. Not many docs are familiar with the extra-intestinal symptoms of gluten intolerance, and they rely on the blood test for initial diagnosis as they have been told that it is highly reliable. In practice however this seems not to be so. with celiac specialists commenting that they regularly see both confirmed celiacs with no antibodies and non-celiacs who have a clear improvement of their celiac-like symptoms on a gluten free diet.

Anyway, rant over. I hope you continue to improve on your diet. BTW I now take all the supplements your doc mentioned to you, and find them very helpful.

"When my symptoms of chronic fatigue showed up about 15 years ago I had enlarged lymph nodes in my neck, they even took a very painful biopsy which was negative. THey were enlarged and tender for years then slowly diminished.

After I quit gluten and casein 2 months ago they hurt again for a couple of weeks as my body worked to clear the toxins from my body. I used to be swollen and puffy and hung over feeling every morning, stiff like an old lady. Its slowly improving."

I could have written the above post. After 6 months gluten-free, they still ache somewhat, but they have gone down in size. They start to ache more if I get a whiff or trace of gluten.

Yes I get this when glutened. Gluten was pushing me into a premature menopause, now reversed. I had really bad hot flushes, and felt pretty hot all the time until I went gluten free. The flushes went away really quickly, along with my periods restarting. Now I am back to my normal "cold" self. If I get mildly glutened I feel my body's internal thermostat start to rise again, but I never have a high temperature as such, and it goes away again within a couple of days once I feel better generally.

I wonder if this issue is linked to gluten-induced thyroid problems? I am sub-clinically hypothyroid, and my thyroid levels were worse while I was eating gluteny foods.