Pandoranitemare

Sounds like you're on the right track Pandora (love your screen name BTW). Good luck & let us know what the test results reveal.

Thank you

My blood test is at the end of March, and I will be sure to post with the results.

I know if I my test is positive I will have to get my daughter tested. Even if it is negative, I can gently suggest that she joins me going gluten free when I go back to it, and see if it helps her too, and she can judge for herself if she sees an improvement in her own bloating etc.

You have all been so kind and helpful, I would seriously be going out of my mind by by now without this forum. Doing this challenge and having to wait so long to get the tests is quite hard...mentally and physically. Having people here just to answer those nagging little questions, to discuss the what ifs, and for general support...you guys are amazing

Thats great, thank you.

So I have potentially been doing myself some good

I don't suppose it matters if I am taking the vitamins during gluten challenge?

I don't eat meat (but I do eat fish, but not every day), so I regularly take multivitamins, omega3 oils as well as a calcium+vitD supplement (because I don't really have dairy either, apart from a little yogurt), I prefer almond milk etc.

I know that vitamin deficiency is often seen in celiacs, but I am wondering if taking vitamins would counter that, or is it a case that no matter how many vitamins you take they just won't be absorbed? Or is is good idea to take them?

I am wondering if during the process of finding a diagnosis, if I am taking all these vitamins it could mask a deficiency?, and therefore not show up a potential problem.

I did go gluten free for a week, as I thought it may be the problem, and certainly did start to improve, but I read about having to continue eating it if I was to be tested, so went back on it and book in with the doctor, who has now got me on a gluten challenge for 4 weeks (because I was gluten free for a week 3 weeks ago) just to be sure I have as much gluten as possible in me before the blood test.

So I do think that going gluten free helps, and right now I would do anything for a bowl of gluten free pasta!

I am waiting to see the results before I push things further, but the more info I have the better.

I don't want to freak my daughter out at this point, as she has already inherited one faulty genetic condition from me! It really upsets me to thin I may have passed on another, especially if it turns out to be celiac (thats a hard one for teens I am guessing)...I think I will cross that one once I know more about myself, and if there is a real chance she could have something too. Also she is in the middle of exams, and I don't think it is a good time to worry her with it until I have some answers.

Thanks for all the great input, and I will definitely look into the the Helicobacter pylori too, I never knew about that one at all.

Coffee? Sleeping pills at night? Any chance you're wheat allergic as well as intolerant and an allergy pill would help? I don't know how I would survive a gluten challenge.

Thank you for your suggestions, I already have tried coffee, and have even tried 'Pro Plus' caffeine tabs-(neat caffeine) which are supposed to keep people awake and alert...but not me..lol.

I am on a lot of pain meds, so more pills are not really an option in case of reaction.(I get side effects really easily too)

I have always had night time insomnia, to the point that even sleeping pills don't work on me.

I always try not to sleep during the day because it makes the insomnia worse. Though in theory I am getting more sleep it is just exhausting sleeping on and off, on and off all day and all night with no decent stretch of quality sleep at all

I am just holding on to the fact that I am doing this for a purpose, and it will end...soon.(not soon enough)

If I am not diagnosed with celiac at the end of this, I will certainly be diagnosed as having lost my mind!

I found out that my maternal grandmother had a history of stomach problems, and was eventually treated for diverticulitis (I am not sure what tests she had). Also my mother had been to the doctor and had been blood tested for celiac, which came back negative although sadly now she has an ulcer which has become cancerous (and inoperable) and in light of that, no further investigation has been taken as her stomach symptoms have been attributed to the ulcer.

This latest news about my family history does seem to point to a fairly strong chain of problems in the female line. In fact even my daughter said to me the other day about how annoying it is when her stomach gets bloated.

My fear now, is that, like my mum, my blood test will also be negative and I will be stuck in the IBS catagory, as my GP already said that it was probably IBS, but would test for celiac just to be sure.

I know I am jumping the gun, as I have not had the test yet, but I have read a lot about the blood test not even being that accurate, so I am getting quite stressed about it.

Could my family history be enough to persuade my GP to take things further even if my bloods are normal?...I know no one can answer that, but I guess I am asking, has anyone managed to get further testing with normal bloods based on a similar history?

Thank you,

You pretty much confirmed what I thought. I know that the blood tests are not always reliable, so I really want to give it the best chance, if I am going to put myself through this, I want to make sure I do it right!

I guess the best thing would be to switch to a wheat based cereal to be sure I am can spread the gluten, and get some at every meal.

Oh, how I stare longingly at the lovely tub of gluten free muesli mix I made I can't wait to eat that again...

I am counting the days till the challenge and testing is over.

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.

I am new here, and just on the road to being tested for celiac, but I was curious to see a post mentioning hypermobile joints as I have Ehlers Danlos Type III (Hypermobility).

I was diagnosed with M.E several years ago as a reason for my constant fatigue, brain fog, joint pain, numbness and tingling in my extremities, dizziness etc. Then a couple of years ago I found out about hypermobility and discovered that I scored highly on the scale for diagnosis. My GP confirmed that I am indeed hypermobile in many joints, and I am receiving ongoing physio and pain management for it. Although my GP maintains that I still may also have M.E on top of the hypermobility, it is hard to define with cross over symptoms.

I have had issues with my stomach (which I put down to IBS) for a long time, but recently the problems have become more severe, to the point that I have now sought further investigation. I felt reluctant to do so, for fear of having yet another condition to worry about. Worse still fearing that my doctor would brand me an utter lunatic who was just looking for more problems! I am lucky that she has taken me seriously and is arranging blood tests for celiac.

I discovered that some people with Ehlers Danlos may be more prone to diverticulitis due to the fact that the gut is more stretchy (because the Ehlers Danlos affects collagen production making all ligaments and parts of the body containing collagen weaker and more lax).

I also turned up a fair few things on people with Ehlers Danlos/hypermobility and Celiac, it may be a coincidence, or just plain bad luck to get 2 conditions, especially as both of them have genetic links.

I have Raynaulds, but I am on so many meds for other things that I don't even want to consider taking anything else.

I have found a great handwarmer that runs on lighter fuel, it stays warm for several hours at a time, so is much better than the gel type ones which only last an hour or so. Check out Ebay, there are also ones which run on charcoal blocks, but they have the slight disadvantage of requiring a supply of refills, whereas the fuel ones run on standard lighter fuel (the liquid not the gas).

I also keep a pair of thermal mittens by the freezer, which I always put on before diving in. I read that mittens keep the hands warmer than gloves. Simple things like keeping mittens in literally every coat I have, so I never get caught out if the weather turns, even though I do wear fingerless gloves all the time anyway is helpful to limit attacks.

Sometimes it has been so bad that the only way I have been able to get the feeling back in my hands has been to take a warm shower, so I really do try to aim for prevention as much as possible.

I already have problems sleeping at night due to other health issues, and now I am doing a gluten challenge I am literally falling asleep about 15 mins after I eat every meal! I end up sleeping for about an hour, at least, and I literally cannot stay awake no matter what I do, then I cannot sleep at night time, but when I do drift off I wake up about every 2 hours.

It is driving me crackers. I am eating plenty of fruit and veg, and taking multivitamins, so I really don't know what else I can do to help with the sleepiness.

Does anyone have any advice please?

Thank you,

I was hoping that was the case.

I really did begin to feel an improvement when I did go gluten free, even though it was only for a short time and I was reluctant to go back on to gluten...

However, I knew it was better to go back on it and get tested sooner rather than go gluten free for a long period then have to undo it all and face the challenge.

I am just looking forward to getting through the test process, hopefully getting some answers, and definitely going back on the gluten free diet regardless of the results because I know it did start to make me feel better.

Just have to get through the next few weeks now!

I am currently on a gluten challenge (eugh!) and I am wondering about oatmeal. It has been my staple breakfast for quite some time (apart from my brief gluten free period when I switched to millet porridge). Anyway, the brand I buy specifically says on the pack it contains gluten, although I am not sure if this is just a small amount due to cross contamination, that they have to say this. It is not an allergy advice 'may contain' warning but a very definite it does contain gluten.

My question is, shall I continue with my oatmeal breakfast, or should I switch to something else with a more definite, and probably higher, gluten/wheat base for the duration of the challenge?

I really appreciate all the advice and information on this site. I have been reading a lot of posts over the past couple of days, it is amazing...and you guys are so helpful and offer such a wealth of good info that you are happy to share

Hi,

I saw my GP today and having described my symptoms she is going to do a blood test for Celiac Disease in 4 weeks time. I tried going gluten free for one week about 3 weeks ago (and it did begin to improve things) . The only reason I stopped was I read that it was necessary to be eating gluten if you got tested, and as I was hoping that I would get the test I thought it better to go back on the gluten.

Is it likely that my one week off the gluten would have affected things too much, and by the time I go for the blood test I will have been back on gluten for about 7 or 8 weeks.

Also would I be better to pile on as much gluten as I can handle, or just eat a little bit every day?

I am feeling quite scared and overwhelmed now as I already have a lot of other health problems, and this is a complication I really don't need in my life, but I also really need an answer as to if gluten is part of the problem, as I have so many 'cross over' symptoms.

I know you must get this question asked a million times over...but I would be grateful of any advice etc.

Thanks