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Diagnoising Yourself


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3 replies to this topic

#1 Danhunter

 
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Posted 22 September 2012 - 05:19 PM

Well I finally managed to get some comfort in the fact that I am NOT ALONE in my frustrations with my doctor. I was thoroughly read threw all the post in relation to the question, and found many people needing confirmation of the disease which they themselves know to be true. Many say they go back onto wheat, barley and Rye and experience horrible symptoms much worse than before as their bodies are fighting off the toxic invasion much quicker, many cannot bare doing it more than a week and ask the doctor to take a blood sample as quickly as possible.
“I explained to the doctor that I expected a false negative, and she told me that was impossible. I already knew better, but she didn't want to hear it. An antibody is always there, so it won't go away if you quit eating a food, she says. We know better here, don't we?”
It ever hurts to seek a second opinion, but asking for a referral to a GI doctor is always the best idea. GPs are just that: General Practitioners. A good one will refer you to a specialist for accurate diagnosis.
I am 100% Sure I have celiac disease... my doctors are not so sure... so nothing special.
Here is my life so far...
I grew up fairly OK health wise, however when I reached the age of 14 my weight began to drop, I could see it happening each morning when I looked in the mirror, the fat on my arms was disappearing and my eyes were sinking back into my head, I had not fat on my cheeks. Not only did I have ghost white skin, my hair turned to straw and I suffered from depression. Does this sound familiar to anyone? By the age of 15 I was two stone underweight, and as usual the doctors tell you “You’re just growing” “you are possibly anaemic” “are you stressed? It ‘s quite probable that it’s related to stress” “JUST EAT MORE” I heard that one more times than I can remember. So I went on with my life, hoping to get better. I never really improved. I always looked malnourished at the time I didn’t even know about celiac disease, I thought it was tapeworm, or even cancer.
Anyway I struggled from then on to gain anything for about 2 years, eventually my hair began to improve, but not much. Of all the times I went to the doctors complaining, they were totally useless and quite frankly I feel as though I have been by the medical profession completely that I have little faith in my doctors whatsoever.
Today I am on the border of underweight and normal. It has been like this for a long time, I struggle to gain anything and keep the weight on. I am now gluten free, and for the past 6 months have improved probably about 30% so not a great deal but compared to the bad old days - a whole lot better.

Here are a list of symptoms I get on a regular basis, either daily or weekly;
Tiredness (despite getting 10+ hrs a night sleep anything less and I get so tired by 4pm I am in tears)
Throbbing Headaches (after a long days work)
Bloodshot eyes (That never go away and progressively get worse as the day goes on)
Bloating (after every meal)
Thin tired skin (malnutrition)
An unnaturally thin build (despite consuming 3000 calories a day)
Hair loss (thin hair all over my head, chest, legs, arms etc.
Very thin nails
Clicking bones when I exercise frequently
Occasional stomach cramps (occurring suddenly and then disappearing)
Very poor sleep on occasions
A skin rash (similar to a heat rash, but nothing to do with heat at all)
Chronic constipation (despite however much or little fibre I get)
Dry skin (all the time all over the body)
An ill looking pallor in the evening
Now... I imagine there to be more, but

Now I have been off gluten for 6 months and these are symptoms I am STILL GETTING, the headaches I used to get were after every meal containing gluten I also got VERY VERY bad wind. Now the headaches after lots of exercise.
I am 22 years old, I SHOULD BE PERFECTLY HEALTHY. I have the digestive system of an old age pensioner and quite frankly I AM SICK OF IT.
Anybody with any advice who can help me understand this frustrating and tiresome problem please help.
I do however suspect that I may have other health problems as well as gluten intolerance. But I need a full examination for that at the gastrointestinal department... but so far are not getting reffered. After 2 years of trying. I am changing my doctor.
Please help.
Thanks for reading.
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#2 kittty

 
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Posted 24 September 2012 - 06:11 AM

Definitely get a new doctor. I am self-diagnosed and went gluten free, but followed up with a doctor after a few months. She was very understanding, and recommended the blood test even though we knew it would probably come back negative. She didn't know much about celiac at first but she RESEARCHED for me, and even called a GE to talk about the blood test results and ask how quickly the antibodies disappear after going gluten free. She said it was pointless to go back on gluten just to get a diagnosis when we can observe through diet what the problem is. She diagnosed me as "celiac presumptive" and that was good enough for me.

After ranting about doctors for ages myself, I'm actually pleased that my doctor has supported me through this. She wasn't able to put a finger on the problem herself, but she sure did listen to me when I came to her with a suspicion of celiac. And she was EXCITED for me, because she knew that I'd been dealing with a variety of different problems for many years.

You say that you're still having problems, but they have gotten any better. Some people take much much longer to heal, so you're on the path to recovery but aren't there yet. Make sure you're eating good food, and not just high calories to gain weight. You probably need to play catch-up with your vitamins and minerals.
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#3 ravenwoodglass

 
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Posted 24 September 2012 - 10:12 AM

Welcome to the board. If you are already gluten free or gluten light testing for celiac will be a false negative. What are you typically eating? Going with whole unprocessed foods is the best for us at first. Are you eating many gluten free replacement foods? We can have problems with some of those especially if they contain Codex Wheat Starch (some consider it to be gluten free but many of us will react to it) Soy and dairy are also common for us to have problems with so you may want to avoid those for now.
Has your doctor tested your levels for vitamins and minerals? It can take some time for us to heal and be able to absorb nutrients properly so do have the doctor check. If for some reason the doctor won't then do supplement especially with the B vitamins. Don't oversupplement with iron unless you know you need to as too much can be toxic.
Do read the Celiac 101 thread as it has a lot of useful information. We have to be careful not only about what we eat but also how it is prepared.
I hope you feeling better soon but it does take time.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#4 intolerant baker

 
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Posted 25 September 2012 - 06:17 PM

Welcome to the board. If you are already gluten free or gluten light testing for celiac will be a false negative. What are you typically eating? Going with whole unprocessed foods is the best for us at first. Are you eating many gluten free replacement foods? We can have problems with some of those especially if they contain Codex Wheat Starch (some consider it to be gluten free but many of us will react to it) Soy and dairy are also common for us to have problems with so you may want to avoid those for now.
Has your doctor tested your levels for vitamins and minerals? It can take some time for us to heal and be able to absorb nutrients properly so do have the doctor check. If for some reason the doctor won't then do supplement especially with the B vitamins. Don't oversupplement with iron unless you know you need to as too much can be toxic.
Do read the Celiac 101 thread as it has a lot of useful information. We have to be careful not only about what we eat but also how it is prepared.
I hope you feeling better soon but it does take time.

I went gluten free before my testing (thinking I had systemic candida for years) so I also had a negative blood result. All my other labs and the past six years of "unrelated" health issues has my doctor also recommending a gluten free lifestyle. My question is whether I should ask for a referral to a nutritionist or RD? I have had B12 anemia and Vit D deficiency for at least two years. I am having difficulty digesting still despite probiotics and digestive enzymes. I have not seen a gastro, my primary has really been incredible and I know she does not think I am crazy or a hypochondriac. Do most folks with the malabsorption issues go to a nutritionist?
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