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Posts posted by DonnaD

  1. I wonder if any of you other Mum's can help?

    My sister (almost certainly G intolerant or celiac and gluten-free) has a baby (6lbs 11ox 3 weeks early, skinny and jaundice) who from birth has had terrible colic, does not settle, hardly sleeps he looks in pain, it is very hard to get any wind up. He was on formula as my sister could not feed him. He has been changed to a lactose free prescription formula but now has chronic constipation and is still miserable. Goat milk formula didn't help much either. My sister was not gluten-free during the pregnancy. He is gaining weight OK.

    My sister's older son is about to be tested for coeliac as he has stopped growing (last 4 pairs of shoes all the same size ) and had a rare intestinal bleeding problem that totally cleared up going DF. (this was when we all though we just had IBS and milk intolerance before my daughter was DX by biopsy last year) so he was not tested for coeliac then as the doctors did not suspect it as he was on the top centile.

    Have any of you ladies had a similar problem? and if so did you find a formula (not soy because of the dangers especially for a boy) Also did you manage to find any medication to help? He is only really happy being carried around but my sis has fibro too and is worn out, not getting any sleep and on her own.

    I can't help thinking we have a tiny coeliac/G intolerant in tha making....

  2. I think it would be worth asking your GP to refer you onto an Endocronolgist. A TSH of 5.28 while it is only just out of the 'normal' range, is high. Your TSH is only part of the story. Your GP would also need to have your Free T3 and Free T4 tested (not T3 & T4).

    TSH of 5.28 is certainly too high. Mine was 2.96 and my GP refused to do further testing so I paid myself and got also got adrenal testing done (as poor adrenal function can further depress thyroid function) and posted the results on http://www.stopthethyroidmadness.com for advice . I consulted a 'top doctor' on their list and he confirmed what I had all ready worked out, I have thyroid resistance (or fibromyalgia by another name) I am going really well on adrenal support and am up to 120mg (2 grains) of Armour, split dosing under my tongue. My temp is up, the brain fog is clearing, I'm getting my life back! a lot of people on the site self-treat as they cannot get their GPs to test/treat.

  3. My 11 yo son's teacher suggested he be tested for ADD earlier this school year. I took him to the pediatrician, asked about Celiac (he tested negative) and other food issues. He's already off milk and has been since about 13 months old. The pediatrician suggested going wheat free, no matter what the tests showed. I had him go gluten-free and he has done well. His teacher no longer thinks he needs to be tested. He still sometimes "zones out", but is a LOT better.

    Plse see http://www.glutenfreeforum.com/index.php?showtopic=17151&hl= where I have just posted re this subject and my daughter.

    Sorry rushing to go out!

  4. in a rush sorry,whitbal!

    My daughter had optical migranes with aura on gluten and was dx dyslexic just after her celiac dx in Nov 05.(words blurry on page hated reading, some ADHA symptoms).

    Post DX, and on 2 x 100mg fish oil twice a day and berocca (high dose multi vit) Oxford University Dyslexia research unit found she is no longer dyslexic, reading age up 2 years in 5 months, but she did have convergence insufficiency (google it) had eye exercises for 6 weeks, now cured, still has a contrast and depth perception problem and has BRIGHT YELLOW glasses for reading and when tired, she can then see the 'numbers in the coloured spots' on the charts, amazing. She is reading for fun now. They have done a lot of research into the link of diet (esp fish EFA oils and B vits) on vision and attention (being celiac vital vits and minerals are malabsorbed).

    I have also found myself that what I though were 'tired eyes' looking at the computer etc and driving at night is 80% better gluten-free. I don't shut one eye anymore when reading at night!

    Hope this gives you some ideas to try,


  5. I have fibro too and have learned so much from Ursula and other kind souls here.

    I have spent the last 6 months (and £ks..) on testing, doctors, vits and sups, hours online. I only realised the link to celiac when my daughter was dx last year and saw that so many of us here have FMS too. A great site for FMS/CFS


    The name of the illness

    A recent report from the Royal College of Physicians tells me I have to call ME Chronic Fatigue Syndrome (CFS). There are lots of other names: fibromyalgia, post viral syndrome, neurasthenia. It is all the same thing. Whilst the experts argue about names, I am only interested in getting sufferers better. Actually, I see ME as a virally induced CFS, but CFS has many other causes. The problem with Western Medicine is that doctors do not diagnose any more. They treat symptoms with symptom suppressing drugs instead of getting to the root cause of disease. This arises as a result of original thinking in medicine being driven by the pharmaceutical companies. The best policy for drug company profits is to have a population of sick people requiring medication for life, so never diagnose and cure - that is bad for business. The multinational pharmaceuticals dictate to the doctors, medical journals and government, and treatment guidelines are set up accordingly.

    There are some common associations that I see in patients with chronic fatigue syndrome between certain symptoms and their immediate causes.

    Colicky as a baby, dry skin/eczema, sinusitis/catarrh -suspect allergy to dairy products. Try dairy free diet.

    Fatigue/lethargy - suspect allergy to grains, hypothyroidism. Try grain free diet.

    Cold hands and feet, muscle ache/spasm/cramp/ twitching - suspect magnesium deficiency.

    Thirst - suspect lack of essential fatty acids, i.e. GLA and EPA (evening primrose/fish oil).

    White flecks on the nails - suspect trace element imbalances, especially zinc deficiency.

    Sugar craving/wind and bloating - suspect gut symptoms, hypoglycaemia. To test this, consider 'Gut fermentation profile.'

    Headaches - suspect allergy to tea, coffee, caffeine, dairy products: try dairy free diet.

    Natural addicts - some people get "hooked" easily on things such as sugar, caffeine, tobacco, alcohol, wheat, cheese, running, chewing gum etc. They tend to substitute one addiction for another. They often have allergy problems. See PIMS. ...........

    http://www.stopthethyroidmadness.com for adrenal fatigue and thyroid links to fibro. good for suggesting self treatment or doctors who will actually listen.

    I have been working my way down the list as most did apply to me :P

    I hope that this is of some help and does not keep you up too late! I don't post much now as I'm supposed to be in bed by 10pm for my adrenal system to re-charge :P:P:P:P but I do drop in occasionally.


  6. Just to add that the sore hot dry lips (do the corners of your mouth crack too?) seems to be caused by a lack of B vits caused by the malnutrition that goes with celiac . This and mouth ulcers affected my little girl for years and we never knew why. she takes 100mg fish oil and a Berocca (high dose multi vit) and hasn't had either problem since being gluten-free except when staying with her dad who forgets to give her the vits. very small red spots can be a sign of a lack of vit c, early scurvy! she used to get them on her legs.

    Not much I know but hope it helps!


  7. I'v had a whole lot of very odd lab results recently including very 'low normal' thyroid results for free t4 and free t3. and Adrenals packing up and a liver failing to detox something! All with a 'normal' Tsh of 2.96, then 1.4. My body temp is usually only 97f.

    I'm seeing a doctor next week who treats adrenals, thyroid with Armour after I had a self trial of prednisalone (closest I could get to cortisol, and 30mg Armour) I lost 3lbs in a week!

  8. I'm a little confused.
    You are not the only one :lol:

    I did Enterolab testing (see signiture) after my daughter was Dx celiac by biopsy last nov and I realised that so many of my health issues, Ibs, Firbomyalgia, heartburn, constipation were caused by Gluten not just wheat as I had always thought. (She is IgA deficiency her were falsse negativenegative. I don't either and was not prepared to go through the torture of a gluten challenge and then get false negative results my GP had never heard of IgA deficiency. :angry: I had been 95% gluten-free for a while. Although I have improved a lot gluten-free and DF - especially GI and chronic pain I felt that my metabolism was packing up, tired, weight gain etc etc. My GP would not test me so I am seeing a Doctor in London who does Enviromental and complementary medicine at my own expense. I have at least Got my thyroid, adrenals, (both low) leaky gut ect tested . I do not carry the main celiac genes but the ones I do have often seem to crop up in folkes here also with fibro and neuro problems rather than classic GI symptoms. My daughter obviously got one of these from me and a celiac gene from her father. I do not think that I have toxic mutated genes!!!, just that long term exposure to gluten has caused a lot of my health problems but possibly not all of them. I am attempting to sort our cause and effect!

    I am not due to see him again for 6 weeks, I guess I am being impatient for answers! Just as I sort out one thing another appears.


  9. Calling all you scientific bods, I am not sure if this is the right place, mods plse move it not.

    I have just had some really 'abnormal and unusual findings' results back on this test, I won't post the entire results as they are very long . Bottom line is that I have been exposed ,at some point, to a 'fairly high molecular weight organic-chemical that the red cells are attempting to detoxify by glutathione conjugation'. :unsure:

    Lab Report says "I have alsolutley no idea what drug, other toxic chemical or tissue-breakdown product might be responsible"

    I was an accountant, biology isn't my strongest subject, even the atomic emissions analysis didn't identify my mystery poison! (I had wondered about mercury fillings, and I did used to work in an office that had been a leather tannery previously, also my fatigue symptoms started after moving house although I have had IBS and back pain for years so think this toxin must be more recent, within the last 3 years.

    My Doctor wants to see me ASAP and has advised milk thistle, lots of water and sauna's until I can see him again (I self refered, my GP is rubbish). :( I am having to pay out of pocket for everything now.

    I tried google but didn't really come up with anything, do any of you boffins know anything about this or could point me in the right research direction?

    I'm assuming that whatever it is has made me more susectable to gluten probelms (genes in the family so a pre-disposition anyway)

    Most of my vits/minerals are low especially B12, ferratin, Iron and zinc, my thyroids are low-normal and my adrenals are on their last legs.

    Any comments or toxic forum links or any comments welcome, I really wasn't expecting this! I was hoping for answers and I just have more questions!!!!!!!



  10. Hi Blondie

    I'm in the UK too, also got and IBS label at 16 or so, although I had C rather than D. I also struggled with an ever increasing list of foods to avoid after getting the york tests done. Only last year when my daughter was biopsy dx coeliac did I reaslise that Gluten was my problem too! Now gluten-free and have normal BM, less pain (I have fibromyalgia too) and currently looking into thyroid and adrenal exhaustion. Gluten seriously messes you up if it isn't picked up! 'Early Celiac' was my daughter's dx but her consultant told her to go straight on the coeliac diet, confirmed the diagnosis and we havn't looked back since. Your consultant sounds useless, sack him! I never got anywhere either until I had health insurance from my, now lost, job.

    Have you ever had any blood testing for coeliac? if not request from your GP who will try and fob you off with just the EMA, ask for the whole lot (someone plse post the list). If you PM me I can give you the name of a wonderful Gastroenterologist your insurance will cover in London. My friend who i 'diagnosed' at christmas dinner is seeing him and he does not give up until he has confirmed/ruled out the coeliac Gluten sensitivity and sorted out the associated problems, she also suffered for years with so called IBS, and candida.

    If you do want further testing DO NOT GO GLUTEN FREE UNTIL AFTER THE TESTS as the results are often falsse negative (as my daughter's were) due to low/no gluten intake. (this is why I did Enterolab sool testing which GPs don't really accept but I needed my 'bit of paper'.

    Tthe actual diet is actually quite easy once you get your head around what you can eat rather than what you cant! There are some excellent cook books available from Amazon.co.uk Once you get a correct diagnosis then bread, biscuits, pasta flour mixes etc are free on prescription, you just pay for an annual season ticket £90 or so. Waitrose and Marks and Spencer have extensive lists of gluten free foods, waitrose own brand goods are gluten-free if possible. The gluten-free manufacturers will send you big sample boxes of bread, cakes, pasta. Eating out isn't too hard either.

    http://www.aafp.org/afp/20021215/2259.html and http://www.aafp.org/afp/980301ap/pruessn.html are excellent and well written article. Also print out full sympotom list, you will be amazed to find things you had never thought of, mouth ulcers, crakacked lips etc, etc, http://brain.hastypastry.net/forums/showthread.php?t=49010

    http://brain.hastypastry.net/forums/showthread.php?t=2132 huge amount of info and links.

    I spent a solid week on this forum initiallly and learnt a huge amount and got an amazing amount of support., thanks Girls (and Boys!) 'Classic Coeliac' and Gluten sensitivity are all part of the same Coeliac 'Iceberg' and cause all the same problems, I would put money on you having Coeliac! My new doctor said that IBS is just a meaninless label for a collection of symptoms with no apparant cause! the 'Gastritis' is just a symptom of the underlying problem my daughter had several attacks after some long courses of antibiotics for UTIs (I suspect the antibiotics knocked out the good bacteria and finally tipped her into full blowen coeliac) she was originally being investigated for H pyrloi and stomach ulcers, they found her reflux and took biopsies to rule out coeliac during the scope, and were surprised that the villi were damaged, and issued the DX.

    You do not need a hypnotist or amitripylene (which really screws you up, I gained 20lbs on it and nearly drove my car off the road several times) You will get your life back!

    Good luck


  11. Hello, been busy recently so havn't logged on much.

    A while ago I posted my thyroid results and have just received my 4 x saliva adrenal test results: If any of you can shed a bit of light I would be grateful. I am 100% gluten-free and df now. I still feel exhausted, fat and 'down' most of the time. I know that adrenal problems can cause hypothyroid symptoms. In fact most of my medical knowledge has either come directly from you wonderful people or I'v followed up on something I stumbled across on the board and googled it!

    Test Result Interpretation —

    MARCH 2006

    8am 16 normal ref: 13-24

    noon 7 normal 5-10

    5pm 7 normal 3-8

    midnight 3 normal 1-4 (I suffer from insomnia, I wake up at 2am, 4am very often)

    cortisol burden 33 (23-42

    DHEA 5 normal (3-10)

    Insulin fasting 3 normal (3-12)

    Insulin post-prandial 3 depressed (optimal 5-20)

    17-OH Progesterone <15 low optilam (22-100)(** day 16 of cycle)

    Total Salivary SIgA 7 depressed. Normal 25-60, bordeline 20-25

    Gliadin AB SIga 3 negative (borderline 13-15) (my Enterolab results are below for comparison)

    (may have genetic Siga problem as false negative results on celiac testing in my daughter)

    Adrenal Stress Index & DHEA. Despite appearing within the reference zone there are indications that you are approaching a ZONE 4 — Maladapted Phase II. This can be seen with a morning cortisol reading below midway, 17-OH progesterone is low and DHEA levels are below optimum levels

    Post-Prandial (After meal reading) varies with the type of meal consumed prior to sample collection. Your result indicated that insulin was depressed Result 3 reccomended further testing. I do not know much about insulin yet.

    Advice: exercise, Vet E, Botanical adoptogen supps, optimise cortisol/DHEA balance, balance sympathetic/parasympathetic activity, rule out inherited Iga deficit.

    I got the results just after I saw my private Doctor (who I am not due to see for another 6 weeks, he has given me digestive enzimens and pro-biotics). I'v given up getting anywhere with my GP!



  12. My daughter (11 at dx) went from 50th to 3rd centile after 3 months old when I started mixed feeding. Really terrible nappy rash. Odd feeding , would live on pretty much bananas only for a few weeks, baked beans only etc, looking back all the foods were gluten-free and DF.

    Obvious milk intolerance (caused asthma, asthma went away within 2 days of DF) tummay aches, hyperactivity. Poor concentration. As she got older, about 2 years behind her peers height/weight but actually looked pretty healthy most of the time as we have organic food and I was wheat free. had tons of energy, irritable at times. Headaches (realised they were migrane post dx) She never slept much, always and early bird, now sleeping in past alarm.

    age 10+ got a lot of UTI's had lots of anitbiotics, then bad heartburn, nausia after every meal. got very pale and had sore cracked lips and corners of her mouth (vit B def) also she always had a lot of mouth ulcers. Poo pale in colour and floated, not much D, had 'gastro interitis' lots of times, ear infections. She seemed to stop growing all together for the last year. She has gone up 2 whole shoe sized and 2 inches post dx.

    A lot of these I only realised were symptoms after dx when I found this site. her bloods were all negative ('cos of almost gluten-free household) dx by biopsy after 3 months back on gluten, she was really, really ill doing that.

    Good luck


  13. I'm in the middle of that book now....it's extremely interesting and not something that has been discussed very widely in the media....the authors feel very strongly about their subject and make a lot of familiar comments related to the...ahem....nutritional incompetence of the average doctor. Their ideas about eating are rather different from all the fitness stuff I've been reading (in which you eat every couple of hours). They are reallly pushing the idea of not eating so much in the day....very intresting, and perhaps worth a try!

    I'v just finished it. It is interesting, when I eat inbetween meals, even healthy fruit etc, I get the 'binge' trigger big time, if I don't eat inbetween I feel much, much better. I'm going to re-read the major points and then go shopping for fish!


  14. Welcome Radman,

    Might I ask what your field is? I'm also a Mum of a celiac child and am gluten intolerant myself. I too wish there were more doctors like you! So here is my (rather long) view of the testing question.

    In the UK the system is that as a biopsy proven celiac, gluten free staples are available on prescription. Also it is impossible to get tested for associated conditions/complications such as thyroid, bone loss, gastric issues,allergies etc. unless a) your doctor has a high degree of clinical suspision or B) you get private health insurance (v expensive) c) pay for everything yourself (expensive and difficult to find labs without a doctors referal). If none of these factors affect you and you are are the sort of person who can live without an official' diagnosis without occasionally cheating or doubting yoursself then no, no point in further testing at all, especially as you would need to go back onto gluten for months and be very ill again for the standard tests to be positive, they are so often false negative when we have been partially gluten-free for even a short while. The Enterolab tests are not really mainstream but it's that or nothing for a lot of us!

    There are many reasons why I got tested, even though I was 99% sure gluten was my problem.

    As a physician when you are in a social situation and politly ask for gluten free food and explain exactly what that means your family/friends will not even question your diagnosis or why gluten is poison for you. They will respect your self diagnosis.

    You will not have to suffer years and years of declining health, in my case IBS at 16 and downhill for the next 20 years collecting diagnosis, fibromyalgia, chronic pain syndrome, gastritis, brain fog, chronic fatigue and have to 'retire' at 42 as I did.

    You will not get 'accidentally poisoned' by family and friends, or made to feel ungrateful when you refuse to eat pasta, even though you have told them 100 times you can't eat it.

    You will not be treated like a hypocondriac If you take a a printout from the Internet clearly listing your major symptoms, about 30 or so in my case, and politly ask for celiac testing because having previously done ATKINS (no carbs) you felt MARVELOUS and your IBS cleared up and now you realise with the benefit of hindsight,why .your doctor will not suggest a gluten challenge for 3 months (or say 3 weeks and nothing show on bloods/biopsy), and treat your refusal to poison yourself as proof that you imagining it.

    You will not be kindly told that the list of 30 or so symptoms is just clinical depression, you are overweight and don't have celiac because they are all very thin, and given more Prozac. Of course there isn't a link between fibro, brain fog and gluten ha ha, what crack pot web site did you see that on? the Lancet on line or BMJ, well you must not have understood the study, you are not a doctor after all! Stick to being an Accountant, oh sorry I forgot you are on benefit now.

    You will not be told there is no such thing as gluten intolerance, its just something made up by the media.

    You will not have to pay thousands of pounds of your own money for extensive testing/treatment of associated conditions over several years and have a medical file 12" thick but only' waste basket' diagnosis of exclusion like IBS and Fibromyalgia.

    You will not be upset that chronically ill members of your family have spent their entire lives and some died because of never being correctly diagnosed. Or that they refuse your help to arrange testing and stay sick and in denial.

    You will not have to spend years reading medical research data and have an entire bookself of books on anything from Candida to Back pain going back decades and getting more and more technical! Amazon won't go bust if you get diagnosed!

    You will not have to watch your child's health decline dispite pointing out to her Doctor that she clearly has food intolerances and should not be off the bottom of the weight/height centile chart.

    You won't feel vindicated 10 years later when a biopsy proven celiac diagnosis is given to your child.

    You won't have to sheer joy of having to buy a whole new larger wardrobe for rapidly growing child with colour in her cheeks who no longer goes everywhere with a large bottle of gaviscon, motilium and mups losec tablets. her chronic mouth ulcers have gone and her lips are no longer sore and cracked. She has got a visual problem and dyslexia and there is research linking these to un-diagnosed celiac, i'm currently researching that and have got her on a university research project.

    You won't have an I TOLD YOU SO speach rehearsed for your own doctor/family/school/everyone who ever doubted that you were actually ill or questioned the state of your mental health after seeing your extensive medical book collection (before your partner asked you to hide it because his parents were visiting)

    And finally you won't have a terrible working memory and terrible spelling due to the toxic effect of gluten in the brain!

    When I found this forum after my daughters dx I spent an entire week reading it. I was in total shock. So many here shared almost identical medical histories to mine that I knew I finally had the answer to my own problems. I am even considering going back to school to study in this area.

    My apologies for the long rant but it isn't often we get a member of the enemy camp change sides!


  15. My Mums GP said that she didn't have any gluten problems, I KNOW she has. I also printed out the tests needed, her GP did none at all, said there was no point. Her generation were taught never to question the doctor so end of story. Following advice here about obtaining written test results I have found that when the receptionist read out 'normal' to me, some previous results were not even in the reference ranges, let alone boderline.

    95% of Docs in the UK are just as cluless as in the US about coeliac. A well informed patient is not respected at all. One consultant actually wrote to my doctor saying that I wanted a thyroid test again because I had gained weight on amytriptyline (read lazy vain female who can't stick to a diet) for the fibro never even mentioned that I had pointed out that thyroid symptoms are virtually the same as fibro....and should have been ruled out years ago, and that amtp is linked to 30-50lbs weight gain in numerious studies on side effects!

    Anything printed off the Internet by an informed patient is seen as being the 2006 equivilent of 'Snake Oil' and of no possible relevance to the 'medicate the symptoms ignore the cause' ethos of western medicine. In fact as soon as the very word internet is mentioned their eyes glaze over. I'v only met ONE young doctor who said she had looked something up on the Internet for me, I nearly died! I agree that 5 mins on google would teach them more about gluten than medical school.

    I can't make any member of my family argue with a Doctor and insist on testing.

    Its good to rant!

  16. I hope you see this before it gets deleted by the mods. This is obviously a commercial only site and doesn't seem to want links to charities or free resources etc. so I guess Ill get banned for promoting my FREE no products information site for Paris in English but I thought its pretty much what you need and hasn't been up long enough to get up in the search engines. Hopefully at this time of day if you are in the UK you will at least have the chance to find it before its deleted. If not sorry... you will never see this post. ??


    Saw it!

  17. What is it, please?

    "Leptin is a powerful hormone produced in fat cells, in control of ALL other hormones in the body. It is essential for survival, guiding the proper response to starvation and use of energy throughout the body. Key signs of a leptin problem include: uncontrollable sugar and food cravings, late night eating, stress eating, weight gain around the middle, inability to reach a goal weight, yo-yo dieting, fatigue, and low-thyroid symptoms. Left unhandled these problems lead to obesity, fibromyalgia, diabetes, heart disease, and cancer." "The hormone leptin, which is in control of subconscious survival, senses the lack of food during the diet and slows down metabolism to survive the period of famine. Once this happens weight loss stops, usually long before the goal weight is reached. If a person tries to cut calories even more, there is extreme fatigue, poor mood, irritability, and depressed immunity – entering into the zone of anorexic-like malnutrition even if significantly overweight. "

    I am wondering if the malabsorbsion caused by gluten leads to the body thinking its starving. There was an old thread about it here. There is a chapter on Fibromyalgia and I have though for ages that my ever expanding tummy was odd for a pear shaped girl and must be linked to hormones in some way.


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