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Billygean

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Billygean Apprentice
Billygean
Posted

Well you can probably see from my other posts that I had mono followed by chronic fatigue and a lot of digestive issues. My coeliac test was negative but I went gluten free on the advice of a coeliac relative and got almost better. Since I still had a while before returning to college I decided to try a gluten challenge. I had four slices of bread in four days and was in bed for the best part of a month. I'm still pretty confused because I also had a cold at the time which can cause issues for people with chronic fatigue. I went off the gluten though and I am no longer ravenous and light headed, and the chronic fatigue's almost gone again.

Saw a doctor and my relative with coeliacs said he might diagnose me on dietary evidence. He's sent me for a blood test and says it'll be positive if I have it. I know this is rubbish so I saw another dr. He was great and said to keep an open mind and do the blood test as if it's positive he can diagnose me but I've been glutenf ree for another 6 weeks now (6 months before the gluten challenge) so we think it won't be. He's referred me - but I'm not going to eat wheat - so I don't really know what to do next?!?

BG

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nikki-uk Enthusiast
nikki-uk
Posted
Saw a doctor and my relative with coeliacs said he might diagnose me on dietary evidence. He's sent me for a blood test and says it'll be positive if I have it. I know this is rubbish so I saw another dr. He was great and said to keep an open mind and do the blood test as if it's positive he can diagnose me but I've been glutenf ree for another 6 weeks now (6 months before the gluten challenge) so we think it won't be. He's referred me - but I'm not going to eat wheat - so I don't really know what to do next?!?

You are right in thinking your blood test will more than likely come back neg after 6 weeks gluten-free - a small bowel biopsy would also most likely be negative as well I'm afraid :(

So, see the doc anyway (possible diagnosis on dietary evidence?)

OR do the gluten challenge (at least 6 weeks ON gluten)....only you know if you are up to that

OR take a gene test (might give you a better idea if you KNOW you carry the 'known' genes for celiac disease)

OR you could just carry on as you are :)

There are many people on this site without a 'formal' diagnosis, but KNOW gluten is no good for them.

Good Luck :)

ang1e0251 Contributor
ang1e0251
Posted

I'm one of those with no official dx. I don't feel the need and will not go back on Gluten , uh-uh. My children are grown and don't need my test results if they choose to be tested. Also I'm a little concerned how my insurance carriers will treat me with a dx. I've heard rumores. You know how you feel gluten-free, if you choose not to do a challenge, it's a personal choice of your own.

zero Newbie
zero
Posted

The gene test sounds like a good suggestion. Have you been tested for a wheat allergy (are there skin tests for that)? It is nice having a label of celiac to justify the dietary restriction but your reaction is so severe that you might just be going through a lot of pain, hassle and expense to finally be told to avoid gluten which you already know.

I'll also suggest that if your feeling adventurous (and because I am an engineer and think of such weird things), you could do another experiment. You have a reaction after eating bread but you introduce a bias because you know you are eating gluten. With the help of a conspirator, you could set up a series of meals which usually don't but occasionally do contain hidden gluten. Perhaps a little flour mixed into spaghetti sauce or something and record what your reactions are. At the end of the experiment you can compare how your reactions correlate to the gluten. I suggest this because one of the most satisfying experiences I had after diagnosis and being gluten free was having an unexpected reaction which I tracked down to some soy milk containing wheat. Even with the celiac diagnosis, it confirmed to me that gluten really was the problem which was not apparent prior to the diagnosis. Good luck.

rob

Amyleigh0007 Enthusiast
Amyleigh0007
Posted

There is a skin test for wheat allergy. I had it done last summer. My allergist diagnosed me with gluten intolerance based on positive resposne to diet (among other factors) so maybe visiting an allergist would be helpful. She seemed to know much more about Celiac and gluten intolerance then my primary doctor.

buffettbride Enthusiast
buffettbride
Posted

My husband is one of those in the "no diagnosis" category as well. We discovered his gluten intolerance after our daughter was diagnosed with Celiac and we decided to keep our house gluten free. Suddenly his tummy "wrongness" went away and so did that peculiar rash on his fingers. ;) He decided that pursuing a diagnosis wasn't as important since he knew gluten (and sometimes dairy) made him feel awful, even when his blood screen came back negative.

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    • WildFlower1
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By WildFlower1 · Posted

      Sorry to put it clearly, at 15, infertility started (tried to word it nicely) meaning menstruation stopped. Which is in correlation to celiac I mean. Thank you. 
    • WildFlower1
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By WildFlower1 · Posted

      Thank you for the reply! Doctors over the years have tested me for everything under the sun and tests are normal, except the decreasing bone density, high FSH (in regards to infertility), lower iron, and all the other celiac symptoms I experience. When I was 15 the infertility started (my whole life growing up I always ate gluten, and always had severe stomach problems, I’m an adult now and I still remember the stomach pain as a child) and then from here, they couldn’t figure out why. At the same time I was having all these celiac symptoms but nobody ever put two and two together.   Eventually in adulthood I went off gluten and dairy and felt better. Later in life, the topic was brought up by doctors, but they could never actually test for celiac because I was off gluten for years.   Just recently multiple doctors brought it up again, and said I should rule it out. So the ruling out of celiac, which is direct correlation with these symptoms, infertility at a younge age, on the edge and getting into osteopenia, etc. etc. is the concern. I was off of dairy for the same time as gluten because it made me sick. I did not surely have adequate calcium/D intake as well over these years.   The matter of concern is to once and for all get celiac ruled out for my own health, a gastro doctor recommended I get it done and other doctors to confirm yes or no to officially rule it out.  For these 6 weeks I have not been eating enough gluten then it seems, if 2-3 slices of bread a day is not really enough. I should increase my intake of gluten then and extend the test time?   Thank you very much for your help!! The test for Immunoglobulin IgA being a value of —> “1.25” shows it is in the normal range of 0.54-4.17 g/L on the test. 
    • trents
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By trents · Posted

      Welcome to the forum, @WildFlower1! The reason you are seeing conflicting results when you research the length of time recommended for doing the "gluten challenge" is that the guidelines have recently been under revision. So there are two components: 1. amount of daily gluten consumption and 2. duration of that amount of daily gluten consumption Recently, the guidelines have been under revision because the medical community was sensing the previous standards were too relaxed, particularly in the daily amount of recommended gluten consumption. The more recent guidelines seem to be calling for higher amounts of daily gluten consumption over (perhaps) as shorter period of time. So, it is becoming a daily minimum of 10g of gluten daily (about the amount in 4-6 slices of wheat bread) for a minimum of two weeks. Personally, I would recommend that amount of consumption be extended from two weeks to four weeks to ensure valid testing. Your Immunoglobulin IgA at 1.25. Was that within normal range? If that one is low, you are IgA deficient and other IgA test results cannot be trusted. But regardless of whether or not you have celiac disease or NCGS (Non Celiac Gluten Sensitivity) the antidote is the same, namely, a gluten free diet. What would you do different if you had a more confident differential diagnosis? And there are other reasons for the development of osteopenia/osteoporosis that you probably should explore. Are you on any serious supplementation for D3 and magnesium?
    • WildFlower1
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By WildFlower1 · Posted

      The results of my blood tests after 4 weeks: *Tissue Transglutaminase Ab IgA —->   “<0.5 NEGATIVE” *Immunoglobulin IgA —-> “1.25” *Deamidated Gliadin peptide Ab IgG —-> “<0.5 NEGATIVE”    
    • WildFlower1
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By WildFlower1 · Posted

      Hi there, I have been scouring the forums, medical journals, celiac websites, speaking to my doctor and there seems to be a contradiction in the exact amount of time one must do the gluten challenge for a blood test. Let me please express my gratitude for taking your time to help! I will try and keep this short. In a nutshell, I am positive genetically for celiac. Previously for many years 10+ I have been on a strict gluten free diet. At a very young age, I had infertility, hair loss, low iron, stomach problems, neurological symptoms, continued low bone density etc. etc. all the symptoms that line up with celiac.  I could never get an “official diagnosis” because I was not eating gluten for years.   Recently, I had a bone density scan, and was shocked at the results. I am young and my low bone density is continuously lowering. This lead me  to seriously consider doing the celiac blood test to confirm if I actually have celiac. Years ago, I had an endoscopy and they did a biopsy saying it was negative for celiac - but I had been on a gluten free diet for years. Now, I asked my doctor if I can start the gluten challenge and get this over with. My doctor said two weeks then get the blood test. I have been having 2-3 pieces of bread daily. After four weeks of doing this, I went for the bloodwork - it came back negative for celiac. I am continuing to eat bread daily, it has now been over 6 weeks. I am not able to get an endoscopy. Please, from your experience how long really must I eat bread daily to ensure I do not get a false negative blood test for celiac? I have read up to 12 weeks. One doctor advised this is foolish to even do this gluten challenge as I am damaging my body. My other doctor said 2 weeks eat it, but it showed negative. But with my recent continuous lowering of bone density I personally need to rule celiac out.   Thank you VERY much for your help, I truly appreciate it!!
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