Celiac Disease :: 4 Years Gluten Free - Still Anemic
Nov 7, 2015
I have been gluten free for 4 years. I have been tired for a long time. I just found out I am anemic (Ferritin 9 - 15-180 is normal). I took Iron pills, 6 weeks NO CHANGE in levels.
My doctor is not taking me seriously. I am waiting for an iron infusion (maybe 6 weeks).
The iron pills completely messed up my whole lower abdomen area (I think that's the cause). constipation, then diarrhea (sp?) crazy bloating, full feeling, aches and pains.
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My daughter was diagnosed with coeliac disease end April 2014 and since then we have taken her completely off gluten. She is now hyper-sensitive to even trace amounts of gluten and can be sick for days if she eats the tiniest of crumbs. Her tests for gut damage were 300+ and she is down to around 18, but doctors would like her levels to be 7 or below. We have been seeing a chiropractor and physiotherapist to help with her muscle spasms and aching over the last few years (back and legs). She has been tested for lupus, rheumatoid arthritis, anaemia, vitamin D deficiency, thyroid problems, calcium deficiency and she came off lactose for a month. Everything has come back negative - although in January this year the consultant put her on calcium supplements to be on the safe side.
However, she is in constant pain which gets worse by the evening (she rates most evenings as 7/10, 8/10 if she has a headache and saves 10/10 for how she remembers it feels when glutened) - her joints and muscles ache (no swelling). She has to have her legs and back which are the worst affected parts, rubbed at bedtime and she goes to sleep with heat packs to ease the pain. She gets a headache as a result of the neck pain about 1 a fortnight. She can get very tired and last Friday she was sent home from school as she was tired, headachy and achy. She came home and spent the day in bed. She used to be so active and was able to swim 4 x a week in a squad - if anything she seems to be getting worse not better and cannot attend as much training. It's horrible to watch her walking around like a little old lady at age 9. In the last three months even during the day - her best day was 3/10 pain. Naturally it really gets her down.
I have been told that the gut in some people can take 2 and half to 3 years to recover - but surely malabsorption wouldn't make her feel worse?
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My 12 yr old son is experiencing no BM after 4 days of switching him to this GFDF diet ... Before he was IBS .... Not sure what to do
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since my son was born a couple of years ago, I have been to several doctors appointments with depression, lethargy and several other symptoms, that had gotten to a point that I felt I couldn't cope anymore. At first the doctor thought it was postnatal depression and then thyroid, but on my second blood test, when she tested for almost everything she could, my blood test came back strongly for coeliac, and as always very low iron levels. That was back in February, four weeks ago at my endoscopy, on leaving, the nurse said the procedure had shown suggestions of coeliac and disease, they had taken biopsies, and not to start on a gluten free diet as other tests would need to be taken. As I was a bit out of it at the time due to the sedation, I forgot to ask what other tests they would be doing? could anyone let me know what they went through after the biopsy in regards to further tests. I am feeling so low and desperate to start the diet, and wait eagerly for the post everyday. I have to go in for surgery for another problem possibly at the end of June, and I am wondering if just to start now, as I really want to feel stronger for that. Thank you for listening in advance.
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Can anyone list me some makes of sweets and crisps that are gluten and dairy free?
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I have an 8 year old who was diagnosed with Coeliac disease last May and has been following a gluten-free diet ever since. Her symptoms previously were pins and needles in hands and feet, mouth ulcers, calcium marks on teeth, bloating, aching joints and bones, and small pink spots on the face. She is also quite small for her age. Her symptoms have cleared up, However now and then she gets sick if we have problems with cross-contamination.
My problem is that she is still experiencing a degree of joint and bone pain. About 2 weeks ago was the last time she got sick because of cross contamination, but last night she couldn't sleep because of the pain. Is this normal - does anyone else experience this?
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Basically I am 25 years old and as i've grown up I've noticed more and more that I was getting stomach cramps and bloating more and more often. It is very sporadic and I couldn't really say exactly what was causing it but I just thought it was normal. This was until the last 12 months when I started to think a bit more about it. I do a lot of exercise and play a lot of football. I was finding that I would get some form of cramp during a football game. Usually quite mild but sometimes worse. I also like to run and when training for a half marathon found that after a certain distance I would get pains. Almost every time after about 30-40 minutes running. It would normally be worse when running in the evenings. I started thinking about it and tried taking several things out of my diet. I am 95% certain I have a lactose intolerance as since cutting that out around 6 months ago I have seen an improvement. But I would still get pains.
This all resulted in me going Gluten Free and I finally experienced what it feels like to have a normal stomach. I was relaxed and could do whatever I wanted without any fear. So I decided for my own health I should get tested for celiacs disease and after 7 weeks of eating gluten again had the blood tests. Today I had the results and they have come back negative. I feel so deflated and just angry. What do I do now? I just feel like going back to Gluten Free and living like that self diagnosed. The weird thing I find with my disorder is it seems to be worse when i'm up and about. If me and my fiancee have gone out around town and have lunch it is often worse when walking around afterwards. I don't always get blinding pains either. It is often just severe constipation or stomach cramps just making me feel uncomfortable.
Really disheartening now and just want to know but can't carry on for much longer and really don't want to keep eating Gluten when I know I feel good when I don't. Any advise?
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Not to go into too much detail, but I was diagnosed with Hashimoto's last Dec (2012). I have seen MANY docs that have no idea what they are talking about. I have finally found a good Endocrinologist who understands hypo-thyroid....but she just wants to treat with synthetic T4 meds. I have also found a Great Holistic doc, that happens to also be a certified nutritionist as well....who understands for every action, there is a reaction. I use both of these docs to collaborate on my health and lab results...to decide how I WANT to treat my self so I can get back to optimum health.
Ready anything you can get your hands on...I repeat! Read anything you can get your hands on! Turn off the TV....and start researching your own health. It's worth it.
I am finding that docs just "treat" the already diseased body, rather than looking for the underlying cause of the disease. Your body is more than capable of taking care of itself if you have the right balance of vitamin/nutrients/minerals. It's when these levels get deficient...that's when you open the door for disease. Once that starts, your health will spiral out of control.
Find out what your deficient in and you can fix your health issues!
So, keep reading and learning. Hashi's patients....look for gluten free, fluoride free...look up iodine and it's effect on your thyroid health. (Dr. Brownstein-Iodine Loading test) Try to get back to the basics....rather than eating frozen foods and processed foods. Check into organic food (Dirty Dozen and the Clean 15). Do a Saliva test to check your adrenal hormones, check your Neurotransmitter levels too (Pharmasan Labs-run it thru your insurance). Read, "Stop the Thyroid Madness" to understand treating thyroid disease with natural desiccated thyroid, rather than just synthetic T4 medication.
There are people out there that understand how to read these results. All of the "goofy" people that tell you not to eat this, take this supplement, etc...may not be as crazy as you think. Look for a holistic, natural doc. Some are better than others...try a couple and see who you are comfortable with.
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Is all alcohol detrimental to Celiac disease sufferers?
The hops in beer are naturally suspected, but what about Brandy, gin, whiskey, etc?
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I have recently "not quite" been diagnosed yet with Lupus however I have certain signs not yet enough for an official diagnosis. High ANA is one, pericardial effusion (mild), no inflammation or symptoms yet. Would have never known I had a problem until the Dr. told me I did!! I used to have severe stomach problems for years, cramps, diarrhea after eating a meal. For hours I would suffer. But for the past 4 or so years it has stopped completely and I am wondering if that is when my immune system started to go overactive due to a possible gluten allergy and now turning into an auto immune disease as a result. I am starting a gluten free diet, today is only day 3, i want to suppress and relax my immune system by not giving it so much work to do!! Unconfuse it and calm it down by eating gluten free and healthier. So nutrients can get absorbed better? Add probiotics, making sure to get Vitamin K...D, B12 etc. (I know K is a big one for Lupus) Does anyone have any views on this or have tried diets like this?
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I hear these go hand in hand and wondered if anyone who is following a gluten free diet has actually gotten better thyroid results without the meds?
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Has anyone tried the new range of gluten free food Udi's?
I saw them in Tesco the other day on 3 for 2 and tried the bagels, muffins and crisps. They all taste just like the real thing! I've really missed bagels since I was diagnosed at 18 so it was great to eat them again.
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I am mid process during the diagnosis (I've had the MRI with and without contrast and get results Monday. I'm currently refusing LP and have the evoked potentials scheduled). If I were to be diagnosed (still hoping not) I have read a lot about being gluten free and that helping with symptoms. As a matter of fact, I may try it regardless of diagnosis to see if it helps. But, has anyone with MS tried it? Did it help?
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I'm going to a party tomorrow night and of course I want to be safe about the drinks I'm choosing to have. I have been doing research on gluten free drinks, but I haven't been able to find anything on Sourpuss! Has anyone given it a go?
Also, what are some good gluten free coolers I could pick up?
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I have had two positive blood tests for celiac disease but a negative biopsy. However, my doctor and I decided it was best to go gluten free as a trial. I am on Day 4 and I have increased fibro pain. Has anyone else experienced this?
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I am also coping with hypothyroidism and I've been searching for the best possible ways to get my health (and life) back. The doctor I have been working with has made the suggestion to go on a gluten free diet. She didn't go into great detail about it, but mentioned that she'd like for me to nix the gluten. I have also read numerous times on the internet about how gluten is a thyroid destroyer. I have tried countless times to go GF, but boy is it hard. I tested negative for gluten and dairy allergies but my doc (a naturopath) was still adamant that I give up the gluten. I feel like such a failure because I only manage to stay gluten free for about 2 weeks at a time until I cave and have something like a slice of pizza or some pasta or bread. There are gluten free alternatives to these items but sometimes they are hard to obtain or are a pain to cook. I have a very healthy diet for the most part but I've found that removing gluten entirely isn't easy. I've also lost weight while going gluten free, which I did NOT want to do. I'm actually already a little bit underweight.
Does anyone have any tips for me? Has anyone out there successfully gone gluten free long-term, and did it affect your condition in a positive way? I feel like a failure because I keep trying to give it up but it never works out in the long run. I always slip up.
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I am coeliac and my GP would like me to try Lisinopril for my unacceptably high blood pressure. However neither he, the pharmacist nor myself have been able to discover if the drug is gluten free. We are also concerned that I have had severe allergic reactions (SJS) to ACE inhibitors in the past.
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I'm gluten-intolerant. Does anyone know if glucose syrup is gluten-free?
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I've made an appt with a naturopath next week as I'm having an increase in bad symptoms since starting levothyroxine 4mths ago and cannot stand it any longer.
I'm expecting to be told to go gluten free. However there's corn/maize starch (contains gluten) in the meds so I'm wondering about those of you who are gluten free - what type of meds are you on?
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I've just been prescribed orlistat completely out of the blue by my GP... And I'm also gluten free as I have a very high intolerance now. So its quite difficult planning meals but think I'm doing ok!
My breakfasts and lunches seem to be between 5 and 10g fat then main meals are nearer to 15g. Is this ok?
What if I want a skinny latte outside of mealtimes, these work out at 2.2g fat... would that make me poorly?
Also am I able to drink wine? I appreciate the calorific issues with wine but I'd still like to enjoy a few glasses on the weekends, I'm more concerned about an orange explosion if I do?
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I am a fellow celiac who dreams of having more gluten-free beer options that taste good and are proven safe. Maybe one day in the future I'll be pushing beer companies to develop such methods. But for the moment I want to know if anyone out there shares my sentiments.
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