UKGail

I really don't think I'd be able to follow something like, as of late I have been mixing in more fruit and veggies and less grains and it actually doesn't seem to be helping that much. I also have poor digestion of fats and I believe almond flour is a staple in the SCD

Sorry I was a bit hyperbolic.

You really don't see products in the UK w/ de-glutened wheat starch?

I've been under the impression they're quite common in Europe.

Hi Tom

Yes, I always read labels, mostly reading them and putting them back on the shelves because I don't dare buy the products, as I find eating one item is ok, but eating half a dozen is not, and if I have a packet of a "gluten-free" treat in the house and find the first one ok, I find the rest hard to resist!

Most of our supermarket foods in the "free from" ranges are free from wheat, gluten and dairy. I guess the codex wheat products must be out there somewhere, but I never seem to pick them up. The UK celiac society officially approves it as gluten (but, obviously, not wheat) free. I suspect I have an allergy reaction to wheat so I take care to avoid it. I think I am probably more obsessive about this than the average UK celiac, but they can't be eating very much codex wheat if it is not commonly seen on the supermarket shelves.

However, I do understand what you mean. I am starting to think that, perhaps in the interests of making sure study cohorts are sufficiently large, researchers are sometimes glossing over sigificant differences in circumstances of their subjects, and thereby rendering their studies overly generic.

When I was being tested my CRP was normal, but my ESR was very high. I felt really ill. After I went gluten free it started coming down. It took 2-3 months to go back to a range which, while not "normal" was normal enough for the Doc to stop worrying.

Gfresh404 - have you considered trying the SCD or GAPS diet? I wonder if either of these approaches might help you.

Yes, given your sister is gluten intolerant, I think there is a good possibility that your pain is exacerbated by gluten-induced inflammation. It was 2 consecutive frozen shoulders that finally led to my gluten intolerance diagnosis (I wasn't responding to physiotherapy, and was, in fact, getting worse every week, and the physio said that something else had to be wrong....). I also suffered from regular migraines which stirred up old neck, thoracic and lumbar spinal pain caused by a car accident some years previously. I only had intermittent stomach or digestive issues. All this pain has gone away since going gluten free, and I am finding that migraines and joint/muscle pain are the first thing to return if I accidently come across any gluten traces.

In the 6 months or so before going gluten free I felt like an old woman, I was so stiff I could hardly move. I gave up trying to exercise as it was counter-productive, it just made everything worse, even just gentle stretching.

As for hives, well I did get these in just last year when my symptoms suddenly worsened and took off in new directions. I stopped getting them within a couple of months of going gluten free. I find that taking anti-histamines helps to control these allergy-type symptoms. I still take them every day.

I tested negative to the celiac antibodies, but key marker of my illness was a very high ESR. Once I went gluten free this fell back steadily to a more normal range. I also tested negative to any auto-immune antibodies like RF etc which can also cause these sorts of symptom, except for a slightly elevated anti-cardiolipin antibody level, and lowish RBC. Again, these markers quickly normalised on the gluten free diet.

I think it would be a very good idea to go for testing, and when the testing is done (but not before), give the gluten free diet a strict and decent trial to see if it helps.

Good luck.

PS If you have structural back trouble, and have not long given birth, the best thing to fix back pain is pilates. It is important to find a teacher who is medically qualified though, or experienced at the rehab level, to ensure they don't injure you further. This is how I fixed my injuries from a car accident. If you are gluten intolerant, it won't work properly without the gluten free diet though.

I'm watching the carbs, but need some or I keep losing weight. Sweet potatoes are my main carb, and I have zero reactions to them. I might have rice once or twice a week, and that seems to be ok too. I have been trying potato, but am not sure about them just yet. I keep making the mistake of expanding my diet too quickly because my appetite comes roaring back when I feel better, and I get the munchies really badly. I paid for my ill discipline last week with a migraine and severe nausea over the weekend, and I have no idea what the culprit was. Ho hum, back to basics again!

Glad you had good news Dani!

Small patches of ezcema from time to time (usually when stressed). Nothing since gluten free.

Dry and itchy skin my whole life, with itchy bumpy bits. Still a problem.

Frequent painful skin splits in the corner of my mouth, on my hands and feet. Seems better than it used to be. I use lots of heavy duty moisturisers.

Itchy spots all over my scalp when I first had a major celiac response about 25 years ago, which very slowly settled down. Came back last year when celiac symptoms worsened again in a big way. Now improving after 6 months gluten free, but not gone entirely.

Tiny itchy sores appear here and there, and don't heal well. They seem to crop up after gluten exposure.

Hives on my neck, chest and arm, for the first time last year as celiac symptoms escalated, now gone (they were at least partly photosensitive).

Burning skin on my face also arrived last year. Mainly gone, but flares up with minor gluten exposure.

Not sure if I have triggers other than gluten, but dairy would be a big suspect for me.

I have never seen an allergist or a dermatologist. My GP treated the ezcema patches with steroid cream. I find anti-histamines helpful for most of the rest.

I've never seen any products with codex wheat, and wouldn't touch it if I did find any. I don't think UK celiacs are "stuffing themselves" with this rubbish. I can't speak for the rest of Europe though.

Weluvgators is quite right. I overlooked this aspect of your posts. I haven't had allergy testing done yet, but am finding that zyrtec (in liquid form, which is lactose free) is very helpful in reducing the severity of symptoms, whether it is just addressing the minor daily aches and pains and sinus issues, or the extreme nausea and vomiting of a glutening. It seems to help with both. Zantac helps too. I find the latter is better if I have acid pain in my stomach (which is now unusual for me), and zyrtec better if there is no acid pain.

Sorry, there are no quick fixes. When I first started out, I quickly found that plain, homemade soups (with meat broth or stock and veggies) were the most soothing thing to eat. For a while I couldn't handle anything fatty, and just stuck to soups, slow cooked plain casseroles, and grilled meat and boiled veggies. Go very easy on gluten free baked goods until you feel better. For me digestive enzymes helped a lot. Probiotics were also a big help. Maybe some multivitamins too if you are deficient in anything, which is likely, but don't add too many supplements to your diet in one go, do it in stages to give your body time to get used to them.

Sorry to hear that Dani. Maybe those wheaty pellets really gave you major dose? I've read a few more posts recently where people say it takes a few months for their periods to come back properly. Maybe you just need a bit more time. I hope you feel better soon.

It does sound like gluten intolerance. If you already have it in the family then your level of suspicion should be much higher. At least 50% of my Mother's family are gluten intolerant, which led me to eventually try the gluten free diet, even though I am negative to the celiac antibodies. Good luck with your doctor, and with your gluten free trial, when the doctor has done all the testing he is able to do.

My cousin was an abnormally quiet and inactive baby. She was found at the time to have a severe lactose intolerance. In her late thirties, the docs finally decided she was celiac. Her Mother had been diagnosed as celiac some 10 years earlier, after suffering undiagnosed for many years.

Your son does look not unlike my eldest daughter did around that age. She had a delicate build (lowest 2%), height was lowest 25%, with a pot belly. Her head always seemed very large in photos, as does your son. She had some mild skin issues, and we had to keep her away from food colourings, and then finally twigged that she was lactose intolerant when she was 9 months old. She tested negative to celiac when she was 9 or 10. She did finally grow when she was 12, but is still just below average height and build.

I don't think the blood tests work on babies under 2, and he is probably too small to scope, so the only way doctors can diagnose celiac in children this young is if they have overt symptoms like chronic diarrhea which responds to the gluten fre diet.

I suspect the only way to look at this more closely would be to trial a gluten fee diet for a couple of months and see if you note any changes. Your docs might be very wary of this though, as they think we are all incompetent about making sure we eat a properly balanced diet in the absence of wheat, barley and rye. A balanced diet is obviously particularly important with a very young child.

Please also be aware that sometimes the blood tests for celiac antibodies are negative, but your symptoms could still be caused by gluten intolerance. With your symptoms, and with a genetic predisposition, and as they seem to have ruled out lots of other possible causes of your problems, you could insist on an endoscopy even if your blood test for antibodies is negative. As with the blood tests, you still have to be eating gluten to give yourself a good chance of a positive biopsy. Finally, if both these tests come back negative, then proceed to trial a strict gluten fee diet, being careful about possible cross contamination, as suggested above.

My symptoms were quite like yours. I did not manage to get a positive diagnosis from the medical community despite trying, but most of my symptoms cleared up quite quickly after going gluten free. In particular the nagging lower abdominal pain which had been variously diagnosed as appendicitis (yes, I also lost that organ), constipation and ovarian cysts, cleared up completely, for the first time in over 25 years.

Hi Sanjoseguy - my great grandmother had pernicious anemia. She passed over 40 years ago, before there was much awareness of celiac disease. Of her 4 daughters, 1 seems healthy as far as we know. One was very thin and had stomach issues her hole life. One was very thin and had many health issues including infertility. The other (my grandmother) was overweight and had rheumatoid arthritis. Of my grandmother's 4 daughters, 2 were diagnosed as celiac in middle age, another one is overweight and has health issues but hates doctors so won't address her problems. The other, my Mother, is gluten and lactose sensitive, but won't go for testing for insurance reasons. I am gluten and lactose intolerant. I don't know any more than that as my doctors did not follow the diagnosis protocols correctly. One of my 2 two teenage daughters is lactose intolerant, at the very least. Half of my cousins are celiacs. There are thyroid issues in the family, including me. There are also various allergies in the family, particularly dairy, and there is at least one other rare auto-immune disorder.

So yes, make sure you are fully tested for everthing, and even if the tests are negative, give the gluten free diet a strict and lengthy trial before discounting it. My instinct is that gluten intolerance is the underlying issue in our family, and that the other problems are probably secondary due gluten ingestion.

Ah! I could have written your post. I too woke up this morning feeling sore and achy and with a muggy head, having also slept through my alarm, which is not normal. My suspicion is with minor gluten contamination of some parma ham I had for lunch yesterday. As soon I ate it (with some safe gluten-free bread and safe gluten-free margarine) my head started to swim, I lost focus, I became sleepy, and shortly afterwards had a mild digestive reaction. I suspect that this is the after-reaction to that food, and it is typical for me of a minor gluten reaction. Or maybe it was the office knife and plate I used? I did wash them before I used them. However, on looking at I also ate yesterday evening, I can't be completely sure that this was the cause of today's problems as I also had a big portion of potato (which I don't eat often and had thought was safe for me) and also had a gluten-free jam tart which had almond flour in it. This was a moment of weakness as I suspect I react to nuts, and I did feel worse after eating it. But would a nut problem cause muscle aches the next day? I don't know. It is very frustrating, and I am cross with myself for experimenting with too many things in one day.

To answer your question, I also have old injuries which play up when I am glutened. I had major trouble recovering from soft tissue injuries caused by a car accident because of ongoing inflammation. It was only resolved by a specialist rehab and a starting (temporarily) a gluten free diet. I also had adhesive capsulitis/bursitis/tendonitis in both shoulders. This resolved on a strict gluten free diet. When I am glutened it comes back in all the old places, plus a migraine, for a few days, plus other symptoms depending (I think) on the dose received. The fatigue that goes with it can last a lot longer.

You said you get a sore throat. I don't get this, but I do get very thirsty when my body starts playing up.

I am hoping that I don't pay for my misadventures yesterday for too long.

Wishing you a speedy recovery.

Bartfull - just wanting to send my best wishes, and hope that you can get through this soon. I'm thrilled that your friends are helping you with the doctor's fees.

In our extended family we had what we thought was a predisposition to lactose intolerance and various other allergies. We also have thyroid problems in the family too. It took 20-30 years for all those lactose-intolerant people to be diagnosed as celiac (all of them without exception!). Please encourage your daughters to be tested too. If your diagnosis is confirmed, which seems likely, you may wish to remind doctors that even if your childrens' blood tests come back negative, they ought to nevertheless consider proceeding to endoscopy, given their family history and their lactose intolerance. Have your doctors also planned a bone scan for you to check for osteoporosis? This is very common in those who have been undiagnosed for a long time.

Dani - how long have you been gluten free? I've been gluten free for 6 months now, and for the first couple of months I reacted very obviously (hives and itching) to foods which I am now able to eat ok. If you are still new to the diet, some of your symptoms may just be part of your recovery, which makes it difficult to decide if you have a real problem with a particular food or not.

My rule of thumb is to leave a food for a while if I think I have a reaction and try it again another time when I am feeling well. My list of good and bad foods is similar to yours. I am also having problems with nuts, including, unfortunately, coconut. I am ok with eggs though.

I hope you feel better soon. Those dammed pesky pet food pellets!

Um - I thought my whole life that I had a delicate stomach that caught every GI virus that floated by, and that in my later years this was exacerbated by migraines. Turns out it was the gluten. In the 6 months I have been gluten free (not as long as you, and I am still recovering and still learning...), I have had 2 such episodes. Both times were due to accidental minor ingestion of gluten. What you are describing seems to me to be a major glutening rather than a GI virus. How sure are you that you have or have had an infection? Could you perhaps have gotten some gluten somehow? Maybe you have also become more sensitive than you used to be?

Also, Flagyl is a hefty medication which can upset the balance of the intestinal flora, which probably isn't helping you either. If your doctor prescribed it, it looks like he thinks you have a bacterial/parasitical infection rather than a self-limiting viral infection. That can be pretty nasty. I've had several non-celiac friends who have recently had giardiasis which was treated with flagyll, and it took them all months and months to recover. They all also needed to adapt their diets and take probiotics to help them recover. Not fun.

Wishing you a speedy recovery.

I have a small one. My acid reflux issues are linked solely to to gluten ingestion. I don't have any other upper abdominal pain, but I do have trouble swallowing, which hasn't improved with the gluten free diet.

I stopped them immediately and suffered the symptoms for about a fortnight before it started to really improve.

If it recurs due to a glutening, it is not as bad as it was before, and I take Zantac for a couple of days rather than omeprazole as I find this works better for me.

I don't think omeprazole is great for celiacs as (please someone correct me I am wrong on this, or can explain it better) as it works by encouraging the stomach to empty its contents before the stomach acids and enzymes have had time to have had their full effect on it. It is therefore probably putting additional digestive pressure on the small intestine which is usually the main site of gluten-related damage.

Zantac is simply an anti-histamine, and works on damping down the over-excited histamine response which seems to go hand in hand with active celiac symptoms. However, I have seen comments that anti-histamines aren't good for sjogrens sufferers as it can apparently exacerbate sjogren's dry mouth and eye symptoms. Gemini will know more about this than I do.

Glad to hear you dumped the amitriptyline along with the dodgy Gastro. I wouldn't worry too much just yet about testing for Sjogrens. Your body is going to go through many changes as you recover from the damage caused by gluten. They dry mouth may be one of them. Or you may be unlucky and be stuck with it. Some people do have Sjogrens and celiac too, but I don't think sjogrens is a condition where you need to be a tearing hurry for a diagnosis.

I was tested for Sjogrens plus a bunch of other autoimmune disorders before going gluten free. All the tests, including for celiac came back negative, but I went gluten free anyway because of a strong family history of celiac, and my symptoms fit right in. Anyway, my dry eyes improved a fair bit after going gluten free, as did all the other possible autoimmune symptoms, to the point where the rheumatologist discharged me.

The reflux went away completely, unless I get glutened, then it returns for just a couple of days.

Yup, been there, done that, and got the T-shirt. Trust your reactions to changes in your diet. BTW - are you still taking amiltriptyline? That stuff is horrible, and doctors hand it out like candy. It made me worse rather than better. I wouldn't touch it again with a bargepole.

Hi Dani

sorry I didn't see this for a few days. I have been battling a busy period with minor cc symptoms, so haven't been looking at posts much. Thank you very much for the info. This food looks quite promising, perhaps not as good as the Zupreen, but much better than what we have at the moment. I will go to our pet food store with both suggestions and let them see what they can do. I'll let you know how I get on.

GFeeMO - I don't remember the ingredients list of the Science Diet cat food, but our cat who used to get bloody stools did not do well on it. His reactions were not as bad as when we tried regular cat food, but didn't do as well as he does on the fully grain free foods either.

If I remember rightly (and it was a while ago), the reaction to the Science Diet food was not immediate, more an accumulative type reaction if we kept him on it. We had tried him on it when he was very young and we first discovered his problem, and discounted it in favour of a higher quality food prescribed by the vet.

It was also the food he used to get when he went to the cattery while we were away on holiday. We used to give them a bag of his own food for them to use, but it meant that they had to keep him locked up in his run the whole time, and not let him out during the day to socialise with the other cats in his section,where he would eat from other cats' bowls. Eventually we decided that keeping him locked up was worse than letting him eat the Science Diet for a fortnight, so we stopped the special requirement.