UKGail

Hi, it sounds like you have answered your own question - you do seem to have gluten sensitivity. Although you may not think your reactions to taking up gluten again may be strong enough to worry about, you are just 18, just a couple of years younger than I was when I first had similar problems to you. I am now 47, and not having the ability to search and share information with other suffers like you do when I was your age, I din't pay much attention to it and went back to eating gluten. I wish I hadn't as it would have saved me a lot of pain and poor health, and trouble for my family. I have just posted my story for a similar question in the next thread down from this one, if you wish to look. My early menopause reversed once I went gluten free, and I also tested negative to the celiac antibodies.

As you have insurance, it might have been better to seek a biopsy before you tried going gluten free. Unless you go back on gluten for a good few months, if you have a biopsy now, and it is negative, you won't know if your gluten free experiment interfered with the result or not.

I would suggest you consider either gluten challenge and biopsy, or go straight for a strict gluten free lifestyle. It is not worth risking your health for bread and cake. Your doctor might not agree with this advice, as many seem to think that a gluten free diet is unhealthy, or too difficult. Well it might be if all you eat is gluten substitutes, rather than just eating home-cooked naturally gluten free meals.

If things don't fully resolve within a few months of being on the diet, or if you feel worse, then bear in mind there may be other problems too which may need medical investigation.

I hope you work out what is best for you.

A couple of things come to mind:

You mentioned an upper GI - did they take any biopsies, or just have look around? Celiac is not usually apparent until tissue is examined under a microscope. Even if they did take biopsies, as you don't have antibodies, any villi damage is likely to be patchy, so they could easily have missed it.

Soy or other intolerances e.g. dairy, eggs, corn etc are a good idea to look at via elimination diet.

Have you thought about food allergy testing? It might be helpful, but isn't foolproof.

Do you have any other family members with celiac, or other auto-immune, or gynaecological disorders? Celiac in particular is strongly familial, and usually goes with other auto-immune conditions or sometimes allergies. Problems can travel in packs, and if you suffer from more than one condition it can hinder diagnosis.

You sound a bit like me, before I got really sick. I had mild problems for about 25 years before it really kicked off. I knew a bit about celiac from diagnosed relatives, and had been on a gluten free diet for a while after I first had health problems in my twenties, and later on in my early forties. With hindsight I experienced a slow increase in energy and wellness on both occasions, and didn't get obviously sick on re-introducing gluten foods again (I didn't stick to the diet for lifestyle reasons, and because I hadn't understood that it was a problem for me). However, on both occasions, my health continued to slowly decline again once back on gluten. It was very difficult to see this at the time, as I had no idea the effects could be so subtle and so varied. Eating gluten finally caught up with me in my mid-forties as my health began to fail in many areas, and after having many medical tests to rule things out, my rheumatologist asked me to go strictly gluten free to see if that nailed it. It did. I knew within a few days that this was the answer, and I continue to improve, albeit quite slowly, after 5 months. I tested negative to all the celiac blood tests, and gluten messed with my reproductive system too. I was told my periods had stopped because I was post-menopausal at 47, but my periods have restarted and have been regular on the diet. The hot flushes have stopped too.

I think the point from the above ramble is that if you are in the early stages of this disease or intolerance, you may not see a quick response to the diet. You may need to give it some more time, maybe keeping a diary of your symptoms, so you can look back periodically to see if there have been any changes.

One final thought, did you do the diet strictly, avoiding all possible cross-contamination? I didn't when I was younger, as I had no idea about it, even though I had relatives who were celiacs. If you weren't strict, then you would not have been able to fully realise the improvements the diet can bring.

Good luck!

Get well soon. I guess at least you know now!

Me too. I have negative blood tests, had a negative biopsy 2 years ago (after being gluten lite for a little while). Doc told me not to worry, I didn't have celiac, and I should eat a normal diet. I did, and my health continued to decline rapidly. I am now gluten free and am much better, but after 5 months my health is still nowhere near back to where it was even 2 years ago. I wish I had listened to my instincts (and my husband)rather than the doctor back then, and saved myself and my family a lot of additional misery. I am 47 and I first became unwell with celiac symptoms in my twenties. It was missed by the docs then too.

I agree with Richard. The most important thing is to stop meals becoming a battleground, as the emotion of the battle can easily overtake the need to eat. Give her a small meals, plus regular snacks. No options. No pleading if she ignores the lot, just take it away after a reasonable time has elapsed. While she is eating, if it just her, you need to be doing something else in the kitchen and not watching her, unless you are both just chatting together. If she is joining you in a family meal, then it might be best if you all ate only foods that are ok for her, so she doesn't feel like she is being stigmatised.

My elder daughter was also very picky. With hindsight she was a natural paleo diet person, eating large amounts of vegetables, especially raw vegetables/salad sticks, tuna and some meat, and hating carbs. In ignorance I didn't give her much in the way of fat, so she was always very small and slim. When she went to school her teacher thought I was an awful mother because she would happily take in a raw carrot for her snack, where all the other kids had crisps or biscuits in their snack boxes. She had to have a packed lunch from me or she would completely refuse the food served by the school. Once she hit puberty she discovered crisps and biscuits, plus pasta, bread and potatoes to some extent too, so she grew well over a foot in a very short space of time and filled out. She now looks like a normal 15 year old, albeit still a bit shorter than average. She is still a devil to feed though.

Be patient, and calm, and you will both get through it. At least you know what your child's problem is. Mine is almost certainly gluten intolerant to some degree (we know she is lactose intolerant and allergic to chocolate), but has stated she doesn't want to have to give up the gluten goodies, and she is now too old to have it forced on her.

Best of luck!

Fascinating discussion here, and the article posted by AVR was very interesting too.

A friend of mine is a leading liver doctor, who specialises in alcoholic liver disease. He insists that individuals have varying degrees of susceptibility to alcoholic liver disease. He has patients in end-stage disease who have consumed the same amount of alcohol as their peer group over a period of time, but are dying whereas their peers are (currently) fine.

It seems like common sense to me that it is probably better to avoid alchohol while healing from celiac disease, taking it up again in moderation as and when your body can tolerate it.

I figured out in my twenties that I didn't tolerate alcholol well after first falling ill with "post-viral fatigue syndrome", and that beer in particular made me really sick. I stuck to wine in moderate doses instead. The intolerance worsened slowly over the years, to the point where I could not drink it at all, and still can't even after 5 months of gluten free. I still live in hope of the occasional glass of wine though! I do test it out now and again, and always regret it afterwards, unless it is just half a glass or so, and very rarely at that.

Sorry, but I am with Strawberry Jam. This is exactly how I feel after exposure to gluten. My main, and first, symptoms are extreme fatigue, migraine and joint/muscle aches, plus my body thermometer seems to go dodgy for a day or two. However my reaction is fast, and gastro symptoms follow after 24 hrs (and are quite mild by the standards of this board).

Strawberry, I would trust your instincts, and keep observing your reactions to possible/probable ingestion or cross-contamination. This is what I am doing, as I am still quite new to this. Maybe we are both barking up the wrong tree? By the way, I haven't had a virus in 5 months since going gluten free, despite working in a school, having school-age children bringing all manner of nasty bugs home, and a husband who had a stinking cold over Christmas. I used to suffer regularly, particularly in winter.

I couldn't use these as hot gluten burns my sinuses, (I had chronic sinusitis which is only very slowly subsiding now I am gluten-free). If I don't get away from the smell sharpish I start to get "glutening" symptoms. I guess this might be a wheat allergy reaction, but I haven't been able to have any tests for this yet.

My head starts to swim, eyes get blurry, and I can't think straight. Migraine then starts up round the base of my skull, spreading into my neck and shoulders. I ache all over and feel like I have the flu. Limbs feel like lead weights. Zero energy. Heartburn. Then grumbly abdominal pain. Nausea. Unable to eat. 24 hours later D starts, usually bright yellow. Another 24 hours, C starts. Nausea, abdominal pain and migraine subside within a couple of days. Brainfog, heartburn, "normal" digestion, joint aches and low energy take much longer. No fun.

What a rotten girl to so undermine your confidence when you are dealing with a big change in lifestyle. I too think you were just unlucky with her, and that there will be plenty more caring, sensitive girls out there.

I have never been to India, but I have friends who are indian born and raised, and our family is a big fan of indian cuisine. Our friends invited us to dinner soon after my diagnosis. I was really worried about this, as I was still strugging at the time to eat anything other than plain meat and veggies. However they went out of their way to make sure there was a good variety of dishes available, with the gluten fee ones well labelled, and the wheat chapattis were made elsewhere and were discretely offered to others well away from the gluten free dishes.

They were both keen to emphasise that this had been no trouble at all, and that much of the indian diet was naturally gluten free. My friend then offered to take us round the indian market in London to show us how to purchase the key ingredients much more cost effectively than in our local supermarkets. The meal was delicious and I didn't get glutened.

With this experience in mind, I am sure you will find much nicer, more sympathetic, girls in time. Good friends will always accept you for who and what you are, not what they wish you could be.

Best wishes

I find this thread quite interesting as I have suspected that my eyes are affected by gluten, but it is quite a subtle effect, not the major changes the OP describes. As I was getting sicker with Celiac, my eyes were also deteriorating, and I was also having trouble driving due to perception problems and difficulties concentrating. I had new stronger glasses for distance vision just before I was diagnosed, and they are still fine. The perception and concentration problems have gradually lifted with the diet. What seems to vary now with the occasional minor glutening is my middle vision blurring for a few days and then getting better. I have to emphasise that this is a very subtle effect which I notice only because I work at a computer all day, and I haven't been gluten free for very long, so it is difficult to be sure. My initial and major problems with celiac were migraine and fatigue, so I wonder if it is a manifestation of the neurological presentations of celiac, or possibly due to systemic inflammation? Vitamin A and/or D deficiency is an interesting thought too, though.

About 10 years ago when I was a stay at home Mum, I ate gluten free as part of a macro-biotic diet. I never felt so healthy and energetic as I did then, and I also had to drop a level in my glasses prescription. Due to gluten free, vitamin sufficiency or avoidance of computer screens? Hard to know.

Great post - full of interesting stories!

I gained about 30 lbs in the last year or two as my health declined, due to stopping exercising and constantly eating carby/gluteny foods to stave off nausea and hunger cravings. This switched to weight loss about a month before I went gluten free as the gastro symptoms kicked into high gear. The weight loss continued on the gluten free diet, quickly at first, then stopped as I discovered gluten-free goodies. These didn't agree with me, so I stopped eating them, and now grains too, so the extra weight is coming off again, but I am not hungry, nor have I yet returned to exercising. Over 5 months I have lost about 20 lbs, with another 10 or so to go before I go back to my normal weight of about 125 lbs. Hopefully my weight will stabilise there.

Raven - like many other answers, I also thought thyroid issues and insufficient nutrition were most likely to be the root cause of your problems.

If your main meal is often just a quick fix meal based on gluten-free bread or similar, then not only is it likely to be insufficient in healthy nutrients, but it might also be aggravating your delicate celiac digestive system.

So, in addition to looking at thyroid, vitamin deficiency, ESR and maybe an ANA test, perhaps you need to treat yourself like a newbie for a while and go back to diet basics, eating just a small number of plainly prepared, well cooked simple meat and veggies?

After I get glutened, I really struggle to eat for at least a week, and I find home made meat and vegetable soups work best for me, ideally using home made meat stock. I also struggle with fatigue, and this regime improves rather than worsens it for me, although you need more calories than soup meals can provide in the long run. You might find that your body makes more effective use of the concentrated nutrition in the soups than it can in a normal cooked meal, and is much better for you than a gluten-free sandwich. Soups also travel well in a thermos flask, so although the causes of your inability to eat during the day might be different to mine, perhaps you might find just a couple of mouthfuls of tasty soup is ok for breakfast and during work breaks, without upsetting you too much?

One final thought, we are all told that eating before going to bed is a no-no. I think that is because the digestive system supposedly slows down a lot while we sleep, so it is therefore even worse for us poor celiacs with our easily upset stomachs etc. Although you clearly need the nutrition from your late night snack if you are only eating one other meal, I would try everything you can to try to rebalance your food intake to earlier in the day. I understand that old habits are hard to break though! Before I twigged to celiac, I was eating 3 meals a day, plus a late night snack because of gluteny food cravings. And my weight was ballooning. Now rapidly coming off, no cravings for nasties and no late night visits to the kitchen either.

I do hope you find the cause(s) of your fatigue and get better soon.

PS lupus and similar are almost as hard to diagnose as celiac, and the ANA test is not very specific. I wouldn't be in a big hurry to spend any money on a specialist unless the thyroid and basic blood tests are all negative and you don't respond to diet/supplementation changes. The ESR and maybe also the related CRP blood test is better at indicating an underlying health issue which needs closer examination. The ESR in particular is a very simple test, and shouldn't be expensive.

I have 2 (of 3)aunts on my Mother's side, one of which has also thyroid issues, the other had another nasty auto-immune disease which thankfully resolved prior to diagnosis, 2 cousins, one non-celiac cousin's child - all confirmed celiacs. There is also me - non confirmed celiac/severely intolerant, a gluten and lactose sensitive mother, a severely lactose intolerant daughter with stong suspicion of celiac/gluten intolerance, grandmother with RA, her siblings with unidentified poor health involving being underweight and infertility, great grandmother with pernicious anemia. The whole family with various degrees of ezcema, asthma, allergies and other grumbly health problems. The remaining gluten eaters generally don't want to be tested. One other cousin newly discovered hypothyroid and now in testing for celiac. You could write a book on it! I don't think there is a single normal, healthy person in my mother's extended family.

Hi, I'm also in the UK, and my GP was also not very alert to the non-classical symptoms. However there are many celiacs in my family which was a pretty strong clue.

I only had vague non-specific abdominal pains, but I was suffering from migraines, which had gradually spread to my neck and shoulders (I always thought this was due to having been injured in a car accident some years ago - Wrong!). 3 years ago I had a frozen shoulder which took a year, several steroid injections and physiotherapy to more or less resolve. Then a year ago the other shoulder froze up. I went back to the physio, and it just got worse rather than better. The physio suggested that there might be an underlying inflammatory disorder, which should be looked at. Basic blood tests showed an ESR of 100, which together with my symptoms was sufficient to generate a referral to a rheumatologist and lots of expensive blood tests for various things, including celiac. None of them came back positive, just the high ESR and a high total IgM antibody level.

A trial gluten free diet quickly resolved the high ESR, high IgM, migraines, neck and shoulder pain (the frozen shoulder released)and back pain, improved the abdominal pain and various other things too.

If I get glutened it all comes back quite quickly.

I know of one celiac specialist who also thinks that long-standing celiac disease may result in sero-negativity.

You might also find the following link about sero-negative celiac disease useful. It is not completely disheartening. There are some doctors who are thinking about this issue.

Open Original Shared Link

Prickly - my journey is pretty similar to yours except I don't get DH, but had other things too. I agree with your feelings about the development of Celiac, that it gets worse, and presents in new ways if ignored for too long.

Navigator has a good point about the scope being useful to rule out other things.

I too have other symptoms which are still bothering me (which weren't a problem when I had my first scope 2 years ago), so I am now considering asking to see a gastro-enterologist again to have them checked out. This will inevitably mean a decision on whether to eat gluten again for a while, which I hate the thought of.

Unfortunately you need to be eating plenty of gluten for the biopsy. I had a biopsy 2 years ago, and was gluten-lite at the time because I instinctively felt better that way, after having been in hospital with nil by mouth for a while. The biopsy was negative and I'll never know if it was due to my gluten-lite diet or if my villi were resolutely intact despite my gluten-responsive symptoms.

They won't do any more blood tests for celiac, but I am not sure that they wouldn't do more tests for other things if your tests picked up another abnormality eg thyroid problems. It depends what tests your doctor ordered. I had some secondary blood abnormalities which all went away within 2 months of being gluten free. But that is not everyone's experience.

As you are so close, I would stick it out if you can bear it. Once you are gluten free, if it helps, you won't ever want to go back, so a formal diagnosis becomes very difficult at that point.

If it all comes back negative, or you decide you don't wish to worry about a formal diagnosis, try the diet anyway.

I have stood exactly in your shoes.

I had known for about 10 years there was a risk of Celiac because of a family history of it, but had always tested negative, so I kept eating gluten.

My health continued to go downhill pretty rapidly and my doc scared me by by saying he thought I might have a connective tissue disease and sent me to a lupus specialist.

The specialist thought it might perhaps be lupus, but wasn't sure, so asked me to go on a strict gluten free diet to see if that helped, given my family history.

The diet quickly got rid of so many symptoms that the answer was blindingly obvious. However this doesn't seem to happen to everyone who has other related autoimmune problems. I suspect I was lucky in nipping the progression in the bud, before it became entrenched.

I would definitely trial a gluten free diet if your doctor refuses to comply with good medical practice, but I would try to stand my ground with him/her first.

I was getting painful swollen hands and lower arms, and also throbbing patches of varicose veins in my legs this summer before I went gluten free.

I don't get DH, but I was getting rashes with at least an element of photosensitivity this summer too.

My doctor sent me to a rheumatologist, so it certainly can be an autoimmune thing, and that seemed to be where I was heading before giving up the gluten. I wouldn't have any idea about other causes though.

Within a few weeks of being gluten free, except for a warm glow/redness still on my face, these problems went away and haven't recurred, even when I accidentally got glutened.

I completely understand.

Its hard for anyone to understand unless they are walking in your shoes. Only after seeing me flat on my back after a quick visit to the bagel shop (for my daughter not for me) did my husband begin to think that maybe I wasn't being overly cautious about the dangers of airborne gluten, which seems to affect me, but doesn't affect my newly diagnosed friend who seems immune to cross-contamination.

I have to admit that I get a bit annoyed about anyone, and especially doctors, being precious about whether someone is technically celiac or not.

With a significant level of negative blood tests (10% in the experience of one celiac specialist), which are later confirmed by biopsy, and with the biopsy itself a bit of a crapshoot as it is acknowledged that the areas of damaged villi can be patchy, or only below the area to where the endoscope can reach, I think the only thing a doctor should say is that they were not able to confirm celiac at this time.

They should then go on to say that the failure to confirm via biopsy does not completely rule celiac out, and that a trial gluten free diet would now be a useful aid to diagnosis and possible recovery.

There seems to be a fair amount of interesting research going on into other proteins and other blood tests which might eventually shed some more light on the topic of gluten sensitivity, but that is not likely to be fast enough to help anyone suffering today.

Ali, I know what you mean about the blood test for children. I felt awful when I put my small 9 year old with tiny veins through it, and even worse when it came back negative. Fast forward 6 years and her indicators are now starting to accumulate. However she is a teenager I cannot simply just put her on a gluten free diet. It is something she will have to choose for herself. All I can do is try to provide an example, and give her the information when she is in the mood to listen.

Your daughter is still very young, and I would trust your instincts on this, after doing all the available testing of course.

Our family is riddled with biopsy confirmed celiacs, but I am negative to the blood tests. My doc was more concerned about ruling out lupus or similar conditions than pursuing a biopsy, so I am already happily gluten free without biopsy confirmation, but I wouldn't neccessarily recommend this route.

A leading coeliac specialist in the UK thinks that maybe about 10% of celiacs test negative to the blood tests. If your blood tests are negative, and you are still sure your symptoms fit, then I would insist on a biopsy, possibly preceded by genetic testing if that makes your doctor happier. In the UK, the official protocol is to biopsy even where the blood tests are negative, provided there are sufficient clinical reasons.

me too. plus most of my team of middle-aged women also have one, all of us with no noticeable problems.

Prickly, I think you are sadly probably right about getting complacent (or dumb). I started enjoying myself eating more gluten free baked goods and started slowly going downhill again. Then I got dumb and went to the bagel shop to get a toasted bagel for my daughter. Waiting in the bagel shop for 5 minutes got me good. I was ill for days, not well for a further week, and my digestion still hasn't got back to where it had been before I got adventurous. Dumb is very a good word for it!