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That sounds very hernia inducing work! You confirm what I have suspected, I get pain just to the right of the umbilical hernia, I am sure there is a connection.  If do see my gastroenterologist I'll mention it again.   I can't help thinking I've also got an issue in my groin, perhaps a hernia threatening, I guess an ultrasound would be needed to confirm it.

For the Inguinal hernia I could definitely feel it, and it came with an obvious bulge that appeared soon after doing a project where I was drilling holes on concrete using a very old school regular hand drill with mason bit, instead of a hammer drill with mason bit--this left me squatting over the drill putting my weight on it for several hours (the hammer drill would not have required this level of stress, nor the time it took). Bad idea--learn from my mistake in being "lazy" and not renting (or buying) the proper tool for the job. My umbilical hernia was around for many years, and I didn't feel that one at all, so never worried about it. My doctor basically recommended doing both in one surgery, which seemed like wise move.  As far as the possible IBS connection to either, it was definitely apparent after getting the Inguinal hernia, which is why I asked my doctor about that, but after getting both fixed I realize that the umbilical hernia likely also had mild IBS effects over the years.

@Scott Adams  Strange question but can you actually feel your hernia?  I have so many abdominal lumps and bumps of longstanding (my GP said it's fat!) that I sometimes wonder if an inguinal hernia could be missed.  I am quite sure some of my pain is from my umbilical hernia but that first came about courtesy of my second pregnancy.

Thanks for sharing this! I've always wanted to go to Ireland, and we did include Ireland in a recent top travel destinations article, so it's nice to know that we got that right:  

That's too bad--this recent topic might be helpful:  

I had double hernia laparoscopic surgery two months go to repair both an Inguinal hernia (a recent home project injury) and an umbilical hernia (which I had for many years, but fixing it at the same time made sense), and am now more or less fully recovered. Recently on the forum someone mentioned the idea of hernia induced IBS, which I now believe was a real for me, but was a fairly minor issue overall, which got worse after getting the more recent Inguinal hernia. My doctor never mentioned this as a possibility, even though I directly asked him about it during my office visit: Me "can my hernias cause any digestive issues?" My doctor: "No, I doubt that." I still need to learn more about hernia induced IBS, but I realize now that I might have been affected by this to some degree in for a while. 

Mallorca sounds like a great travel destination! This article may also be helpful--it contains a gluten-free restaurant card that might be handy when eating out:  

This is an old article from 2007, but interesting:  

It takes weeks/months for the celiac-related antibodies to dissipate once gluten is withdrawn but it also takes that amount of time for them to build up to detectable levels in the blood once gluten is reintroduced. I'm not certain about this but unlike the individual IGA celiac antibody tests results, I don't think IGA deficiency is tied to gluten consumption. You all seem to be in a Catch 22 situation here. You GP ordered the wrong test. He/she should have ordered an IGG panel.

Ok.. these test was ordered by her primary. There was one other test showing that she is IGA deficient. I am hoping that the GI is able to give us more info in April. That just seems like an extremely long time from now.   We don't typically eat much gluten because it makes me feel awful (bloating, fatigue, abdominal pain, extreme joint pain, mouth sores, migraines...) but I've never been diagnosed with anything because i refuse to eat gluten in order to be tested. I dont need a dr to tell me it makes me feel poorly.. But, anyway,  2 weeks prior to this test, shortly before she started having symptoms, we dramatically increased the amount of gluten consumption in the household due to holidays and visitors and easy meals due to family sickness.. so I'm wondering if she just hadn't eaten enough to test positive??? Symptoms just kept getting worse and now that she's been off gluten again all the symptoms have disappeared.    Husband and I are going to keep her off gluten for a while and try again to see if symptoms reoccur after reintroduction to gluten. Gi Dr isn't going to see her until the end of April anyways.

@hjayne19, welcome to the forum.   Sorry to hear you're having a bumpy start in your journey.  Let's see if we can smooth the way a bit for you. To correct anemia, more than just iron and B12 supplements are needed.  Other B vitamins including Folate B 9, Riboflavin B2, Pyridoxine B 6 and Thiamine B 1 are needed.   Wheat flour (and other products containing gluten) are mandated to have vitamins and minerals added to them to replace the vitamins lost in processing.  Gluten free processed foods are not required to have vitamins and minerals added to them.  Now that you are gluten free, you must get your vitamins and minerals from a nutritionally dense diet.  I'm glad to hear a dietician is helping with that.  However, newly diagnosed celiac patients tend to have subclinical deficiencies and absorption problems, so adding a B Complex supplement is beneficial.  The B vitamins are water soluble and easily excreted by the kidneys if not needed.   I had terrible night sweats, but correcting a severe Vitamin D deficiency cleared that up quickly.  Optimal Vitamin D levels are between 75 and 100 ng/mL.  Vitamin D levels should be corrected quickly with high doses.  Vitamin D helps regulate the immune system.  Your Vitamin D level was affected and falsely elevated because you were taking a Vitamin D supplement.  The bloodstream is a transportation system and not a reflection of the amount inside cells where the vitamins are used.  Same thing with your B12 and iron levels.  One should be off supplements for eight to twelve weeks before blood tests to look for deficiencies.   Blood tests for B vitamins are not accurate. Doctors don't agree on optimal levels or even minimum levels required to prevent illness.  Blood levels don't reflect how much is inside cells where the vitamins are utilized.  One can have "normal" blood levels, but still have deficiency symptoms within organs and tissues before blood levels change.  This is especially true if Thiamine B 1.   Athletes require more Thiamine than people less active.  We need more Thiamine when we are physically ill, emotionally stressed and physically active.  We need more Thiamine when we eat a diet high in carbohydrates.  The more carbs we eat, the more Thiamine we need.   Anxiety is an early symptom of insufficiency of many of the B vitamins.  The eight B vitamins work together in concert, so the insufficiency symptoms tend to overlap.  My anxiety resolved after taking a B Complex and additional Thiamine in the forms Benfotiamine (shown to promote intestinal healing as well as enhanced athletic performance and recovery time). My insomnia and the racing thoughts keeping me awake also resolved with additional Thiamine in the form Thiamine TTFD (tetrahydrofurfuryl disulfide).  This TTFD form of thiamine, along with Neuromag, a form of magnesium, really has helped with brain function, anxiety and insomnia.  Don't take Thiamine close to bedtime as it may keep you too alert or energetic to sleep.  Take in the morning, and at lunch, but not after supper.   I also have taken Tryptophan and Lysine as well as Theanine, all essential amino acids, that our bodies use to relax, heal and sleep.  Passion flower tea or supplements also aid in getting sleepy without feeling groggy the next morning.  Chamomile tea or Oolong also help with insomnia. Interesting Reading: Effect of physical activity on thiamine, riboflavin, and vitamin B-6 requirements https://pubmed.ncbi.nlm.nih.gov/10919966/ The effects of endurance training and thiamine supplementation on anti-fatigue during exercise https://pmc.ncbi.nlm.nih.gov/articles/PMC4241913/ Effects of thiamine supplementation on exercise-induced fatigue https://pubmed.ncbi.nlm.nih.gov/8815395/ Exploring the Relationship between Micronutrients and Athletic Performance: A Comprehensive Scientific Systematic Review of the Literature in Sports Medicine https://www.mdpi.com/2075-4663/11/6/109 Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet https://pmc.ncbi.nlm.nih.gov/articles/PMC8398893/ Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Nutritional Consequences of Celiac Disease and Gluten-Free Diet https://www.mdpi.com/2036-7422/15/4/61 Impact of a Gluten-Free Diet in Adults With Celiac Disease: Nutritional Deficiencies and Challenges https://pmc.ncbi.nlm.nih.gov/articles/PMC11692684/

Which supplement says take 3 four times a day? Take the B Complex, one Benfotiamine, one Thiamax and one Neuromag at breakfast.   You can take more Thiamax and Benfotiamine at lunch with another Neuromag.  

Hello Surinder, and welcome to the forum. Thank you for sharing your experience. Have you been diagnosed with coeliac disease? Although less common, there are reports of coeliac disease being associated with pulmonary conditions causing symptoms such as a chronic cough.     Case Report: A case of cough, lymphocytic bronchoalveolitis and coeliac disease with improvement following a gluten free diet

I read with interest someone's article regarding gluten and coughing and how drs could not diagnose the cause. I am a prediabetic and in the process of cutting down on carbs I slowly eliminated bread and added more complex carbs and found that my cough had gone and I was feeling generally calmer and happier. This was an accidental finding and I relate to your story. I have shared my story for you. Kind regards, Surinder

tldr: "we tested your daughter with one test and that result does not suggest Celiac. However, the test we used should not be used as the initial screening test for celiac (like it appears they did) because it misses a lot of cases ("low specificity"). No further testing is scheduled or pending" We eat "gluten" and our bodies digest part of it into "deamidated gliadin" (GLIADIN (DEAMID)). The gliadin is what actually triggers the Celiac disease pathway. The celiac's immune system sees gliadin much like an invading virus, and makes antibodies (AB) against gliadin. Each antibody has the ability to recognize a specific target (anti-gliadin antibodies recognize gliadin). When antibodies find their specific target, they stick to it and call in other parts of the immune system to help eliminate the target. This process also causes the immune system to make a lot more of that antibody, and your test was designed to measure if there was an elevated level of type A (IgA) anti-gliadin antibodies. Antibodies, which are also called immunoglobulins (Ig), come in different types (e.g. class "A" or "G"). Think of antibodies as different kinds of cars, and antibody types as different colors of car. An "A" type (color) is called IgA, and a G type is called IgG. IgA's are more relevant to Celiac disease than are the IgG's or other types. Unfortunately, some people don't make very much of the IgA class (like not making aqua-colored cars, even though they make the same cars in green) and that's a common reason for the gliadin-Ab-IgA test to fail to identify celiac. As Trents wrote, they should have given her a "total IgA" test and probably tested her for the anti-tTG IgA antibody.  

So I have the Benfo, Thiamax, and Neuromag along with my Super B Complex. When I read the labels it says take 3/take 4 times a day but one pill a day is ok correct since its 4 pills at breakfast.

You are very welcome @Dizzyma. Gastroenterologists are now following this rule in the UK more and more with children, so I am not surprised your daughter is not having an endoscopy.   Switching to a gluten free diet should begin to help, but also, even if you have to have testing done privately, it would be very helpful for you to find out if your daughter has vitamin and mineral deficiencies, which is highly likely,    In the UK tests are generally offered on the NHS for B12 and ferritin, and sometimes vitamin D.  Shortages in these can really cause any anxiety or depression or ramp it up. If you do end up supplementing, make sure your GP is aware as levels do need to be monitored, for example,  too much ferritin can cause huge health issues. Re: anxiety, definitely speak to a GP or another health care professional about this if it is an issue. Hopefully the Coeliac Society of Ireland will also be able to help. Cristiana  

Welcome to the celiac.com community, @mamaof7! It means for the one celiac disease antibody test that was ordered, she tested negative. However, other tests should have been ordered, especially for someone so young who would have an immature immune system where there would be a high probability of being IGA deficient.  The one test that was ordered was an IGA-based antibody test. It is not the only IGA antibody test for celiac disease that can be run. The most common one ordered by physicians is the TTG-IGA. Whenever IGA antibody tests are ordered, a "total IGA" test should be included to check for IGA deficiency. In the case of IGA deficiency, all other IGA tests results will be inaccurate. There is another category of celiac disease antibody tests that can be used in the case of IGA deficiency. They are known as IGG tests. I will attach an article that gives an overview of celiac disease antibody tests. All this to say, I would not trust the results of the testing you have had done and I would not rule out your daughter having celiac disease. I would seek further testing at some point but it would require your daughter to have been eating normal amounts of gluten for weeks/months in order for the testing to be valid. It is also possible she does not have celiac disease (aka, "gluten intolerance") but that she has NCGS (Non Celiac Gluten Sensitivity, or just "gluten sensitivity" for short) which is more common. The difference is that celiac disease is an autoimmune disorder that damages the lining of the small bowel whereas NCGS does not autoimmune in nature and does not damage the lining of the small bowel, though the two conditions share many of the same symptoms. We have testing to diagnose celiac disease but there are no tests for NCGS. To arrive at a diagnosis of NCGS, celiac disease must first be ruled out. A gluten free diet is the solution to both maladies.   

For reference, daughter is 18 mths old. Was having painful severe constipation with pale stool and blood also bloating (tight extended belly.) Liver and gallbladder are normal. Ultrasound was normal. Dr ordered celiac blood test. We took her off gluten after blood draw. She is sleeping better, no longer bloated and stools are still off color but not painful.    "GLIADIN (DEAMID) AB, IGA FLU Value  0.84 Reference Range: 0.00-4.99 No further celiac disease serology testing to be performed. INTERPRETIVE INFORMATION: Deamidated Gliadin Peptide (DGP) Ab, IgA A positive deamidated gliadin (DGP) IgA antibody result is associated with celiac disease but is not to be used as an initial screening test due to its low specificity and only occasional positivity in celiac disease patients who are negative for tissue transglutaminase (tTG) IgA antibody."   Anyone know what in the world this means. She isn't scheduled to see GI until late April. 

Hi Trent and Cristiana, thank you so much for taking the time out to reply to me.  My daughters GP requested bloods, they came back as showing a possibility of celiac disease, she advised me to continue feeding gluten as normal and wait on a hospital appointment. When we got that the doctor was quite annoyed that the gp hadn’t advised to go gluten free immediately as she explained that her numbers were so high that celiac disease was fairly evident. That doctor advised to switch to a gluten-free diet immediately which we did but she also got her bloods taken again that day as it made sense to double check considering she was maintaining a normal diet and they came back with a result of 128. The hospital doctor was so confident of celiac disease that she didn’t bother with any further testing. Cristiana, thank you for the information on the coeliac UK site however I am in the Rrpublic of Ireland so I’ll have to try to link in with supports there. I appreciate your replies I guess I’ll figure things as we go I just feel so bad for her, her skin is so sore around her mouth  and it looks bad at an age when looks are becoming important. Also her anxiety is affecting her sleep so I may have to look into some kind of therapy to help as I don’t think I am enough to help. thanks once again, it’s great to be able to reach out xx   

Forgot to add...  Quite a lot of 'tapas' are gluten free. Ones to look for:  Tortilla de patata (a thick omelette made with potatoes and onions) should be 'sin gluten', and chorizo cooked in red wine makes a nice dish.  Look out for sobrasada, which is very Mallorcan, a softer type of sausage/pate which you can spread on gluten free crispbread which you should be able to buy for supermarkets.  Until very recently we could not buy it here in the UK but we've managed to find a local source, and Lidl have started to sell it in tubs, too. Here's more info on it: Sobrasada is a soft, spreadable, cured pork sausage from Spain's Balearic Islands (like Mallorca), distinguished by its reddish color from paprika, sweet-spicy flavor, and pâté-like texture, perfect for spreading on toast, cooking into dishes like eggs or pasta, or drizzling with honey. Its unique texture comes from the island's humid climate preventing full drying, resulting in a semi-soft sausage that's gently aged, unlike drier mainland chorizo.

Hi @cristiana   Thank you so much for your reply. This is so helpful. I definitely suffer from anxiety mostly related to health. Brain fog definelty doesn’t help this when it comes. I find my 4 am wake ups are potentially more food related if that’s a possibility (eating enough carbs with protein and fats) and if I eat a small snack before bed to hold throughout the night. I just haven’t been able to help the sudden increase in more days where I can’t fall asleep for hours - it’s those racing thoughts like you describe. I feel like a machine that’s running and can’t shut down.    I will try the epsom salt bath that’s a great suggestion. I think I’m probably working through some other food triggers that may be contributing as well with brain fog.    Anyways sorry to go off. It feels so reassuring finding this community and being able to chat with others. I was definitely feeling a bit crazy until I realized there are many others going through the same thing. 

Hi Jayne Great choice for a gluten-free cycling holiday, I know the island well. The words you need to look for are 'sin gluten' when you are out and about.   I think you will be amazed at how many packets and canned goods are clearly labelled 'sin gluten' in the supermarkets - many more than one sees here - often in quite large type.  There seems to be a thought in the UK that if you label something gluten free it will affect flavour etc and will put people off buying it!  However, in the case of Spain, it is almost as if the the Spanish see it as an endorsement of quality and flavour!  There is a supermarket called Mercadona and they label their produce very clearly. Paella should be gluten free so long as the chef use the right stock such as Knorr or a gluten-free homemade stock - you can check.  Most Mallorquins in catering speak English but if not, ask, "Contiene gluten?"  Tumbet is a wonderful dish if you like peppers, tomato, aubergines, garlic and olive oil!  A sort of variation on ratatouille.   Slow roast lamb shank should be safe, and there are endless fish dishes to choose from and salads.  Flan is made with eggs, sugar and caramel, and should be gluten-free.  Lots of gluten-free ice cream and sorbets, they should be clearly labelled. If you want specific restaurant recommendations, feel free to PM me. Cristiana    

One thing to keep in mind is that it's pretty safe to take a B-complex since B vitamins are water soluble. You just pee out any excess. 

Hi @hjayne19 It sounds as if your insomnia is closely linked to your anxiety.  I had awful anxiety at diagnosis, and that feeling of doom that you describe.   My other symptoms were racing thoughts, and a tangible sensation of a weight bearing down on my shoulders, even if I was feeling perfectly well and happy - it would just hit me.  I then got a phobia to make things worse, linked to the fact that I had was suffering hypnopompic hallucinations (brief hallucinations on waking).  That was weird but I later learned they aren't all that uncommon, especially with people who suffer from aura migraines.   In fact I felt so unwell that I didn't even recognise it as 'anxiety'.  I remember googling my various symptoms and it was only that that  made me realise I was suffering from anxiety, which was nothing like 'feeling a bit nervous before taking an exam' or , say, making a speech.  This was a whole new ball game. As I came off gluten and healed, the anxiety started to get less and less.  It is not uncommon for coeliacs to have anxiety on diagnosis, so I hope that is reassuring to you.   And deficiencies can make it worse, or cause it, so are definitely worth investigating in further depth if you can.   There is certainly a big difference between 'normal' levels and 'optimum', as @trents says, and this excerpt from a British website and explains how with B12,, for example,  a normal level in one person can represent a deficiency in another: In the UK, normal B12 levels vary slightly by lab but generally, above 200 ng/L is considered sufficient, 100-145 ng/L indicates possible deficiency, and below 100 ng/L suggests likely deficiency, though levels between 146-200 ng/L may still warrant treatment if symptoms are present, as per North Bristol NHS Trust and NICE guidelines In fact, I understand levels are set much higher in other countries, such as Japan.  When I started to supplement B12 with high dose sublinguals I began to feel better, even though at diagnosis my levels were considered 'low normal'.    I too had a lot of muscle twitching which was likely due to deficiencies, but of course if someone has a lot of adrenaline in their system it will only make twitching worse.  I remember reading on this forum one should take magnesium tablets, and it did really help.  As a sportsperson you might like to try throwing a good handful of Epsom salts into a lukewarm bath, and have a soak for 20 mins, as it can be absorbed through the skin.  But be careful as you leave the bath, it can make you woozy! Lastly, to address the anxiety,  I found Dr Steve Llardi's book, albeit on Depression, incredibly helpful.  The Depression Cure: The Six Step Programme to Beat Depression Without Drugs.    Dr Llardi outlines a step-by-step plan for recovery from depression, which focuses on six key lifestyle elements that have largely disappeared in healthy doses from modern life:  physical exercise,  omega-3 fatty acids,  natural sunlight exposure,  restorative sleep,  social connectedness, and meaningful, engaging activity.    The other book (and there is a website) which helped me understand anxiety and recover is Paul David's, At Last a Life, written by a one-time sufferer.  I live in the UK and if I could award a knighthood to anyone in this country, it would be to Paul.  I am so grateful that these books crossed my path.   Anyway, sorry for the length of this post.  I hope something might be of help. Cristiana  

Hi @trents thanks so much for the insights this helps alot.    These were my metrics at celiac diagnosis. In which my diet has since changed over the past 3 months Magnesium: 0.80 mmol/L Vitamin B12: 1021 Vitamin D (25-OH): 102.8 I would say I do get tired after eating more carbs and the only thing that really helps me fall asleep with insomnia is if I eat a banana or a snack. I have a follow up appointment soon so will look into those other B vitamin levels. 

When you say "vitamin B" was normal? Which vitamin B are you referring to? Typically, physicians will only check for B12 deficiency because it can connect to iron deficiency via something called "pernicious anemia". But all the B vitamins work together in a synergistic fashion. That's why we recommend a high potency B-complex. And D3 is turning out to be much more important than we ever realized. In many ways, it is a "master vitamin". And in the modern world where we spend much more time indoors than our ancestors did, we often don't get enough of it, especially if we live in northern latitudes. And it's also true that "normal" levels may not be the same as optimum levels.  Ferritin is an iron storage protein. The body can rob from storage in order to maintain immediate blood levels of iron so, yes, ferritin can take longer to rebuild than hemoglobin counts. Your ferritin levels are low end of normal.

Hi celiac community. Reaching out for some help. I am traveling to Mallorca in May for a cycling trip and would like some recommendations on gluten free safe eats and if there are things in the stores to buy. Let me know what works 

Hi @trents Thanks for the reply. I appreciate it. I have been on an iron supplement for 4 years. (Started at Ferratin at 6) and has always sat around 20-30s. I also have been a high level athlete so I’m sure that doesn’t help. I will sometimes get readings around 50 but haven’t stopped my supplement so assuming it can be from taking it the day before.  Also get muscle twitches too which maybe is pointing to some other deficiency.    My magnesium vitamin B and D were all normal right before going gluten free but I’m also reading more about zinc and the different types of b vitamins that may affect some symptoms as well. So will have to look into that. When can iron stores expect to replenish? Does it take awhile? 

@trents - THANK YOU, that is a really helpful and interesting post. I have had fairly extreme symptoms. Being a veteran hypochondriac I've been imagining all sorts and what you say makes me think I've probably been up to my usual catastrophizing!    That said, I foresee another colonoscopy appointment if things don't settle down soon., and if I have got diverticulosis I guess that is how they will find out. I've just checked some statistics and I had no idea until I googled the condition that such a large percentage of the UK population has diverticulosis, i.e. 50 per cent by the age of 50, and that diverticulitis itself - i.e.  inflammation of the diverticular - affects 5-25 per cent of the population.  Oddly enough I knew a young woman with it and she told me years ago that it felt like there was a baby's foot wedged into her stomach at times, just like when she was expecting a baby, and this is exactly how it feels to me at times (although I realise as a man you will not be familiar with this sensation!)   I also do have an umbilical hernia which I think plays me up. On your other earlier points - I have read elsewhere that sudden intake of fibre can cause a lot of discomfort.  It reminds me of the time I swapped a chocolate bar with a muesli bar with apricots in an effort to be healthy, and there was a stone in it which broke my tooth!  No pain no gain I suppose!  And re: new intolerances, that too is very likely.   I will start keeping a food diary and my husband has today bought me some peppermint tea, hopefully that might help disperse some of the bloating! Thank you.    

Welcome to the celiac.com community, @hjayne19! Because of the damage done to the villous lining of the small bowel by celiac disease's inflammatory process, absorption of nutrients from our diet is generally compromised and over time it is typical for those with celiac disease to develop nutritional deficiencies. Your low ferritin is evidence of that. We generally advise those who have been newly diagnosed to invest in some high quality and high potency gluten-free vitamin and mineral supplements to address this. We're talking about more than a multivitamin. We usually advise B-complex, D3 (5-10k IU daily), zinc, and magnesium glycinate. In particular, magnesium can be helpful for sleep issues and the glycinate form is important as it is assimilates much better than a lot of common forms you see on supermarket shelves which are formulated more for shelf-life than the are for assimilation. Has your ferritin rebounded yet? You may also need an iron supplement if you aren't on one already. Do you have Costco stores near you? Costco's Kirkland Signature brand and Nature Made brand of vitamins and supplements are good quality, economical choices and will be labeled gluten-free on the packaging if they are.

Making significant changes in our diets, even when it is in, what would we are told by the experts, a healthy direction, can be upsetting to our system until it adjusts. To make an analogy, it's like beginning an exercise regiment when we don't ease into it gradually. That's one thing that occurs to me as a response. And I think as we get up in years this becomes more and more true. We become less adaptable to change. The other thing that occurs to me is that you may have added in things, that though they are nutritionally dense, may be things that you as an individual may have some degree of intolerance to. You mention nuts and citrus. Those are packed with nutrition but also high in histamines. And citrus is not only high in histamines but is also a histamine liberator. I know from personal experience there are some things I can eat occasionally, in limited amounts and I'm okay. But if I eat them too often or consume large servings they will give me an upset tummy or a migraine attack or both. And you might also look at the possibility that you have developed diverticular disease. Nuts and seeds are a no no for that I understand.

Hi! I am a recently diagnosed celiac and my first post here.    hoping for some help. I initially didn’t have any gastric symptoms before diagnosis. Mostly night sweats almost every night and bad insomnia. Sometimes 1-3 hours before falling asleep but mostly waking at 4 am and not able to fall asleep. I felt like a zombie. I have also had low Ferratin for years. Sleeping got a little better I also realized I wasn’t eating enough carbs after working with a dietician.    it’s been 3 months gluten free. I definitely am on the more sensitive side I would say. I get really bad panic/doom anxiety which was bad before diagnosis and has since improved but comes in waves. Now my insomnia has been bad again and looking for some advice. I try to keep a strict routine morning and night. But can’t seem to turn my brain off even though I’m exhausted.    Anyone else going through something similar? 

Hello fellow coeliacs and a Happy New Year I'd appreciate some advice. In December I gave up junk food and ate a new healthy diet, which had a lot of gluten-free oats, nuts, oranges in it, and a quite a lot of black coffee, rather than my usual lattes etc.  After a week or so I felt awful bubbling and bloating in the area which I would say is the ascending and transverse colon.  Earlier in the day it might start with stabbing pain, maybe just two or three 'stabs', or a bit of an ache in my pelvis area, and then by the evening replaced with this awful bloated feeling.   I can still fit into all my clothes, there isn't any visible bloating but a feeling of bloating builds from early afternoon onwards.  The pain and bloating has always gone by the morning.  BMs normal.   I went back to my normal diet over Christmas, for a couple of days things improved, but the bubbling and bloating then came back with a vengeance.  I'm having an ultrasound in a couple of weeks to check my pelvic area and if that is clear I suspect may have to have a colonoscopy, but is there anything anyone can recommend to calm this bloating down.  I have been given an additional diagnosis of IBS in the past but it has never been this severe.   I have to confess that I might have had some gluten over Christmas, I ate a lot of Belgium chocolates which were meant to be gluten free but the small print reveals that they were made in a shared facility, so I have probably brought this all on myself!

I've been buying my seeds and nuts from Prana Organics for a number of years because the products have been GFCO-certified. I just got a new order delivered of their flax and sunflower seeds, and it turns out that they are no longer GFCO-certified. Instead, it just has a generic "Gluten Free" symbol on the package. I reached out to them to ask what protocols/standards/testing they have in place. The person that wrote back said that they are now certifying their gluten free status in-house, but that she couldn't answer my questions related to standards because the person with that info was on vacation. Not very impressed, especially since it still says on their website that they are GFCO-certified. Buyer beware!

Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK.  Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs.    If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend you join Coeliac UK, as they provide a printed food and drink guide and also a phone app which you can take shopping with you so you can find out if a product is gluten free or not. But one thing I would like to say to you, no matter where you live, is you mention that your daughter is anxious.  I was always a bit of a nervous, anxious child but before my diagnosis in mid-life my anxiety levels were through the roof.   My anxiety got steadily better when I followed the gluten-free diet and vitamin and mineral deficiencies were addressed.  Anxiety is very common at diagnosis, you may well find that her anxiety will improve once your daughter follows a strict gluten-free diet. Cristiana 

Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.

Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 

very interesting thanks for the info  

More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.

Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting in the mouth corners, and dry mouth to name but some. The link below is for paediatric dentistry but it applies to adults too.  Have you had follow up for you coeliac disease to check that your anti-tTG2 antibodies levels have come down? Are you certain that you not being exposed to significant amounts of gluten? Are you taking a PPI for your Barrett's oesophagus? Signs of changes to the tongue can be caused by nutritional deficiencies, particularly iron, B12 and B9 (folate) deficiency. I would make sure to take a good quality multivitamin every day and make sure to take it with vitamin C containing food - orange juice, broccoli, cabbage etc.  Sebaceous hyperplasia is common in older men and I can't find a link to coeliac disease.   Russ.   Oral Manifestations in Pediatric Patients with Coeliac Disease – A Review Article

Hi @Charlie1946 You are very welcome.   I agree wholeheartedly with @knitty kitty:  "I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants." I had a type of tingling/sometimes pain in my cheek about 2 years after my diagnosis.  I noticed it after standing in cold wind, affecting  me after the event - for example, the evening after standing outside, I would feel either tingling or stabbing pain in my cheek.   I found using a neck roll seemed to help, reducing caffeine, making sure I was well-hydrated, taking B12 and C vitamins and magnesium.  Then when the lockdowns came and I was using a facemask I realised that this pain was almost entirely eliminated by keeping the wind off my face.  I think looking back I was suffering from a type of nerve pain/damage.  At the time read that coeliacs can suffer from nerve damage caused by nutritional deficiencies and inflammation, and there was hope that as bodywide healing took place, following the adoption of a strict gluten free diet and addressing nutritional deficiencies, recovery was possible.   During this time, I used to spend a lot of time outdoors with my then young children, who would be playing in the park, and I'd be sheltering my face with an upturned coat collar, trying to stay our of the cold wind!  It was during this time a number of people with a condition called Trigeminal Neuralgia came up to me and introduced themselves, which looking back was nothing short of miraculous as I live in a pretty sparsely populated rural community and it is quite a rare condition.   I met a number of non-coeliacs who had suffered with this issue  and all bar one found relief in taking medication like amitriptyline which are type of tricyclic anti-depressant.   They were not depressed, here their doctors had prescribed the drugs as pain killers to address nerve pain, hence I mention here.  Nerve pain caused by shingles is often treated with this type of medication in the UK too, so it is definitely worth bearing in mind if standard pain killers like aspirin aren't working. PS  How to make a neck roll with a towel: https://www.painreliefwellness.com.au/2017/10/18/cervical-neck-roll/#:~:text=1.,Very simple. 

We just added a ton of new recipes here: https://www.celiac.com/celiac-disease/gluten-free-recipes/gluten-free-dessert-recipes-pastries-cakes-cookies-etc/gluten-free-cookie-recipes/

I have had celiac for many years and still had terrible digestion. I cook from scratch, never eat anything with gluten ( A Gut that needs special attention seems to affect many who suffer from celiac) .  I made my own Kombucha, it helped my Gut much more than the yogurt I made but I still had issues. Water Kefir did nothing. As a last resort I made MILK Kefir and it has really started healing my Gut. It has been about 2 months now and I am doing so much better. It was trial and error getting the right PH in the Kefir ferment that agreed with my stomach, too little ferment, too much, I finally hit the right one for me. Milk Kefir has the most probiotics than any of the other. I can't find my notes right now but there are at least 30 probiotics in Kefir, Kombucha has about 5-7 and yogurt around 3 if I recall correctly.  I wish you all the best, I know how frustrating this condition can be. 

@cristiana Hi, thank you so much, I will look into those books for sure! And get bloodwork at my next appointment. I have never been told I have TMJ, but I have seen information on it and the nerve issue while googling this devil plague in my mouth. Thank you so much for the advice!

@trents Thank you so much, I will try that 

Peanut Butter cookies - on the crisp side.   approx 20 smallish cookies  1 C  plus 2 tblsp rounded. 'natural' peanut butter ( the kind you have to stir to blend the PB & oils)....  I know, it's a pain!! 1/2 c granulated sugar ....plus 2 tblsp dark brown sugar 1/4 c olive oil... plus 1 tblsp 1 large egg .....and 1 tsp vanilla 2 tsp cinnamon - optional but is yummy with the PB mix the above.  In another bowl mix the following dry ingredients: 1 cup brown rice flour  ( I use this  flour as it leaves no yucky after taste in my cookies & lb cakes..... and coffee cake, I buy it at the "Bulk Barn" here in Canada....... states side try health food stores??? I'm not sure where you can buy bulk food that also carries gluten free flours. 1/2 tsp baking soda.....1/4 tsp salt   (I use the pink sea salt) Mix well or sift, then mix with wet ingredients. heat oven to 350f, line baking sheet with parchment paper. Roll about 2 tblsp dough between your hands, place on cookie sheet and press down  with a fork.   The flatter the cookie the crispier it is.     Bake 13-14 min  When done leave on baking sheet till cool. Cheers, Florence   

I know it's after the holidays, but it would still be fun to do a cookie recipe exchange on this forum.

I did talk to the nurse and she asked who told me no red meat.  I explained the person who called with the results of my blood work.  That was last week.  She told me the doctor was on vacation and would be back this week and she would talk to him and have someone call me this week.  I have not received a call yet.  I will call them back Monday as a reminder.

I shop a fair bit with Azure Standard. I bought Teff flour there and like it. they have a lot of items on your list but probably no soy flour, at least not by that name. https://www.azurestandard.com/shop/product/food/flour/teff/brown/teff-flour-brown-unifine-gluten-free/11211?package=FL294 As mentioned in another answer, Palouse is a high quality brand for dry beans, peas and other stuff. I buy some foods on your list from Rani. I've been happy with their products. https://ranibrand.com/ Azure and Rani often use terms that skirt around explicit "gluten free". I've contacted both of them and gained some comfort but it's always hard to be certain. FWIW, my IgA antibody levels are very low now, (after including their foods in my diet) so it appears I am being successful at avoiding gluten. 

fwiw, I add nutritional yeast to some of my recipes. since going gluten free I eat almost no processed foods but I imagine you could sprinkle yeast on top.

@Charlie1946, There are many vitamin deficiencies associated with PCOS and Celiac disease and mental health issues.  The malabsorption of nutrients caused by Celiac can exacerbate PCOS and mental health issues. Vitamin B 3 Niacin (the kind that causes flushing) improves sebaceous hyperplasia and PCOS. (300 mg/day) Vitamin B 1 Thiamine improves dysphagia, and with Omega Threes, Sjogren's, and PCOS.     (300 mg/day) The other B vitamins are needed as well because they all work together like an orchestra.   The fat soluble vitamins A, D, E, and K, are needed as well.  Low Vitamin D is common in both PCOS and Celiac and depression.   Deficiencies in Niacin Thiamine, Cobalamine B12, Folate B 9, Vitamin C, and Vitamin D can cause mental health issues.   I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants.  My mental health issues didn't get better until my vitamin deficiencies were corrected and a gluten free keto/paleo diet adopted.   Though blood tests are not really accurate, you may want to get tested for deficiencies before supplementing, otherwise you'll be measuring the vitamins you've taken and blood tests will show blood levels that are too high. Yes, Thiamine TTFD and the other vitamins are available over-the-counter.  A B Complex with additional Thiamine TTFD and Niacin made a big difference to my health.  I follow a paleo diet, and make sure I get Omega Threes.  I took high dose Vitamin D to correct my deficiency there.   I've run through the mental health gamut if you would like to talk about your issues.  You can personal message us if you would be more comfortable.   Interesting Reading: Nutritional and herbal interventions for polycystic ovary syndrome (PCOS): a comprehensive review of dietary approaches, macronutrient impact, and herbal medicine in management https://pmc.ncbi.nlm.nih.gov/articles/PMC12049039/

Hi @Charlie1946 I am so sorry to hear you are suffering with this problem.   Just a few other thoughts.  I had debilitating anxiety prior to my diagnosis.  I was never admitted to a hospital but thankfully had a lot of support from friends and family, and found a couple of publications contained really helpful advice:  for depression, The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi, and for debilitating anxiety, At Last A Life by Paul David.  Both can be ordered online, there is also a website for the latter.  If you are deficient in or have low iron or B12 this can cause or worsen mental health issues.  I am sure my own issues were caused by long-term deficiencies.   If you can get your blood tested, it would be useful.  In the case of iron, make sure you only supplement if you have a deficiency, and levels can be monitored, as too much iron can be dangerous. If you have burning mouth issues, very bad TMJ or neuralgia,  I understand the pain can be managed by the use of a certain class of medication like amitriptyline, which is also used to treat depression.  But there again, it is possible with the correct diet and supplementation these issues might improve? I do hope that you find relief soon. Cristiana

@Charlie1946, as an alternative to milk-based protein shakes, let me suggest whey protein. Whey and casein are the two main proteins found in milk but whey doesn't cause issues like casein can for celiacs. Concerning your question about celiac safe mental health facilities, unfortunately, healthcare facilities in general do not have good reputations for being celiac safe. Most celiacs find that they need to depend on family members to advocate for them diligently or bring in food from the outside. Training of staff is inconsistent and there is the issue of turnover and also cross contamination.

@knitty kitty are you kidding?  I had no idea about the casein!! No one ever mentioned that to me at all!! I basically live off that milk! I have also wondered if I have Sjorgen's , but I haven't been to the doctor yet. Can you get the TTFD over the counter? I do have dysphasia and I have lysine I just haven't been good about taking it. I am so glad I found this group and all of you with all this helpful information!! I thought I was going crazy!!  I have sebaceous hyperplasia too- is that related to Celiac?  OH , and I wanted to ask if there is a site where I could find information on mental health issues , with celiac safe facilities??