Keight
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Also, get your vitamin and mineral bloods done at the same time as the Coeliac serology tests. Saves getting another blood test and you know the full extent of any malnutrition.
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Being upset is part of the process. So if the feeling of being upset at the way we were treated, misdiagnosed etc. It is par for the course.
My suggestion allow it. Feel it and allow those feelings or thoughts they are valid. Your experiences were what they were on this path, and sometimes they were bad and it's ok to grieve or be angry about it as you process this .
Aye. Good advice. Thank you.
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I just got diagnosed last week. I was told t wean myself off rather than jump straight in. Today was the first day i made a proper effort and i think i was 95% successful. I went up to Tesco also and was shocked at the price of gluten free food. £2.50 for a spit of cereal and same for a small loaf of bread.
I haven't been actively eating gluten for 10 years. I was off it completely from 2011-2014 for body building comps. I was GRATEFUL to never have to eat gluten again. Very happy to dive head first into my usual eating style.
I don't eat commercial cereals and bread, so not really missing much. I am a wholefoods advocate. I work better on such foods, and my share of the food bill is lower than my boys, though I eat like a horse and choose free range/grass fed meats. I try to get organic grains etc where possible in bulk. Soooo much cheaper than my boys gluten containing processed foods they enjoy.
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Yeah you should probably go whole foods, read the newbie 101 about other things you should do. BTW it is much easier and cheaper to eat simple eggs and bacon/ham, hardboiled eggs, simple veggie dishes (sauted, salads, steamed, baked, grilled), and simple meat dishes like baked fish, stewed/roasted meats, etc.
I second the wholefoods. Cheaper, more nutritious and versatile. Go nuts with herbs and spices to make dishes work for you.
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Maybe it's just me... but after all that you've been through, I would confirm that:
There were at least six biopsy samples from the duodenum sent to pathology
And
The biopsies shoe normal villous architecture according to the pathologist s magnified view
Before I would agree to more medical testing with this physician.
If it turns out that your doctor didn't take duodenal biopsy samples, don't go back! Is my advice. I'm not a doctor but if he's trying to diagnose or rule out Celiac by taking large intestine samples, he's not up on current Celiac diagnosis standards.
Agreed. All sounds rather confusing tbh.
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I'm so glad you found out. I was 58 when I found out, now 63. Looking back, I probably had it since I was a teenager or at least young 20's. So many other problems that are taking me years to overcome, and some I never will. But I still consider the day the naturopath told me as the day that man saved my life.
I have to try hard to stop myself being upset at doctors. To think you could have had a lot less to shoulder... Sigh. I guess your thinking is best; be grateful we find out eventually rather than not at all.
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Oh man! Are you ever lucky!
I know, right?? I feel I kind of earned it; after 46 yrs of other doctors saying all sorts of things and not bothering to look at the bigger picture.
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I am quite fortunate in that my GP has already made a note in my file for the biopsy in 12 mths, and she has already arranged for my boys to have serology tests. Plus, she wrote a list of supplements I need, the amounts I need and made an appointment for a dexa scan. She is totally on the ball. She wanted to give me a list of accredited dietiticians, but I wish to find my own.
Oh, to have found her years ago!
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Definite Coeliac diagnosis. Super high bloods and severely damaged villi.
Welcome to the elite team, hey?? ?
Thank you all for putting up with me the last 4 weeks. Especially to Cyclinglady.
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Holy moly! Now the biopsy is done, I have had 6 days strict gluten-free. I had forgotten how much BETTER I feel without any gluten.
My mood is remarkably brighter, my intestines are a lot less bloated and sore, my joints feel free to move without inflammation, no reflux, no nausea, my back is straight with a better posture from not crouching over a sore stomach, my nails feel stronger, I am laughing and singing, I did a decent workout at the gym, I am not yawning at 3 pm and best of all, I am having bowel motions 1-2 times a day!
The gas is still being expelled, my sinusitis is still with me though lessened, I am still crashing at 7 pm and my appetite is not really back.
My family and work mates are all amazed at how the gluten for the challenge knocked me about. I have proven to myself, once and for all, that I must stay gluten-free.
Thank you all for providing support for those hideous weeks. Due to get the biopsy results in the next few days.
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I have just had my endoscopy two days ago. Haven't really been eating much gluten over the last 10 years, but had to eat it daily for the lead up to the endo.
I found I had stabbing pain in the abdomen around the navel area. And a dull ache from the left to the right all across just below the navel.
Now I am not eating gluten, that left to right area under the navel is tender and feels bruised. The stabbing pain around the navel has gone. Bloating has decreased and nausea is going.
I have had this pain under the navel for a good 4 years and assumed it is uterus pain. The uterus is lower and further in. This is just below the ab muscles.
My blood work for Coeliac was high on both, so just waiting on pathogy results.
My intestines feel like sand paper has been rubbed down the insides of them and that area is bruised from a giant kick to the area.
Does that all make sense?
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Yikes. Not a stack of fun. I think it wise, though, to reschedule with an anaethstatist.
Fingers crossed it all goes well for you this time.
I understand all too well about feeling crazy and it is all in your head. I had many symptoms of mild haemophilia, some that landed me in hospital for weeks, yet not a single dr thought about haemophilia. It is a male only disorder. I was told all the pain etc was in my head.
Erm, symptomatic carriers CAN get mild haemophilia I am now told. *told them so, but who am I??*
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Cyclinglady, I need to send you flowers! I owe you a debt of gratitude. THANK YOU. XX
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Hi. I had my biopsy done yesterday. The immediate report noted nothing out of the ordinary.
Biopsies taken for h. Pylori and Coeliac.
Can my elevated IGG and IGA indicate just the h. Pylori and NOT Coeliac? Could all this be just h. Pylori? Or are the antibodies for both different?
Having not eaten much gluten over the last ten years, it may be my intestines have semi healed and my 3.5 weeks of gluten challenge isn't enough to show a Marsh 2-3. So, it will be inconclusive that I have Coeliac - from a medical perspective.
No way am I eating gluten for more testing!
I am feeling really over all this. If worst comes to the worst, I'll just stay gluten-free. I know I feel loads better without gluten.
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I had an interesting week away. I started eaten more gluten for my biopsy about 3.5 weeks ago. I found I was immediately drained at work. I am a 46 yo female truck mechanic and found the physical side quite easy...til the challenge started.
I am also an avid bodybuilder, so my sessions at the gym (usually lift 6 days a week) have stopped. No energy at all. I actually wanted to vomit just setting foot in the gym.
Anyway, 1.5 weeks into the challenge, I went to Bali for a week, to say goodbye to a dear friend. Doing nothing that week was great. My nausea dissipated in intensity, migraines disappeared and the burning inflammation in my intestines dulled.
Back at work, I am finding I am super tired, curled over with pain and inflammed intestines and the nausea is back with 24/7 intensity.
I suspect my intestines are forced to work quicker whilst at work, and would have to do if I were at the gym. That is all I can put it down to.
Not sure if that helps, but thought something might resonante with you.
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We all react so differently. I lose weight easily and have to over eat and do nothing to maintain weight.
Make sure you keep up hydration. Might help a bit with the water retention.
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Bahahahahaha! I wondered what fuelled that!
On behalf of us all, I thank you, cyclinglady, for all that you do here. You go beyond the extra mile.
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I think I shall avoid that site; along with many others. How annoying information like this gets around! Thank you all, especially cyclinglady, for shedding light on that.
Quinoa, rice and sweet potato are my staples. I'd be lost without them.
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On the list is the suggestion that quinoa isn't so good because it can mimic gluten properties. Thoughts, good people?
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Inflammation weight gain is largely water. The body holds on to it.
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Lol. Agreed, cyclinglady. You sensible person, you!
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Wow! Thanks for all that, OP. I had two panels done, but without my paperwork here, I cannot tell you what they were; deaminated gliaden IGG or IGA and another with IgG or IGA. One was 110 and the other 70- something. It has me a wee bit anxious that, either, they are false positives, or, I might have a fair bit of damage.
If it isn't Coeliac, what on earth has me have very low vit and mineral levels?!
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Oh, I should clarify a few things. My Coeliac blood tests were in the very high range, so a biopsy should confirm a Coeliac diagnosis.
Blood tests for various vitamins and minerals all came back low on the range of normal. I eat extremely healthy, clean food and am an avid body builder. That was a huge red flag for my dr.
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Thank you, Fredo. My bloods done mid last month showed low in all. Really, the only thing to do is stay off the coffee, or at least enjoy the one I do have. I appreciate you taking the effort to respond.
Hi GFinDC. Seems I am on the right track with my thinking. Hoodwinked myself into thinking I was ok all this time. Time to start healing, hey?
Gluten challenge food list for low carb/keto
in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Posted
What about mock meat? Seitan? Do these contain gluten?