Coeliac Disease :: When Did You Begin Eating Gluten Free?


May 18, 2015

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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Coeliac Disease :: 2 Years Into Being Gluten Free Still Sick

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 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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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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Coeliac Disease Or Just Gluten Intolerance

My youngest son is 3 years and 3 months old. He is very tiny and under weight and is diagnosed as failure to thrive.

For over 2 years he has been, very cranky all the time and emotional, poor appetite refusing to eat any thing apart from bread, cereal and pasta. He has low iron and is taking iron supplements and is tired a lot.

He us under the care of two paediatricians and a dietician who so far have not been able to find a cause for his problems and why he is so small.

One of the paediatricians came  to our house to see my son. She examined him and felt his tummy etc. then asked is he had been tested for celiac disease or gluten intolerance. Which he hasn't. 

The paediatricians said it would be a good idea to get him tested and she would refer him to other paediatrician to arrange for tests to be done.

She also said it might be a good idea to try removing wheat and gluten from his diet.

So we removed gluten and wheat from his diet straight away. He has had no wheat or gluten in his diet for 4 weeks now and we are seeing big improvements. He is like a different boy, he is a lot more happy, less tired, he is doing normal poos fro the first time in a very long time and he is getting his appetite back. He is finally for the first time in over 2 years not refusing food and is starting to eat proper meals.

Although we are seeing big improvement I am beginning to think that the paediatricians advice to remove wheat and gluten from his diet was perhaps bad advice as I realise now that you need to be eating gluten and wheat to be tested.

My son is due to see second paediatrician in 3 weeks time. I don't know if they will do tests then or if we will have to come back another time. Should I re add wheat to his diet now so he can be tested, will 3 weeks be long enough.

Was it a bad thing to remove gluten and wheat from his diet.

Does it sound like he might have celiac disease or a gluten intolerance

 

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My doctor is not taking me seriously. I am waiting for an iron infusion (maybe 6 weeks).

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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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