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Gluten challenge

Elisabeth Hollis
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Elisabeth Hollis Newbie
Elisabeth Hollis
Posted

🤮 Hi I am new to celiac.com, I am diabetic and have multiple autoimmune problems, sarcoidosis asthma, probable psoriatic arthritis or rheumatoid etc.. my gastro has put me on a gluten challenge. I am a week in and I am suffering terrible headaches, I can’t think I have nausea and dizziness and the latest is the whole house smells like Mac and cheese is this normal ? Please help !

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trents Grand Master
trents
Posted

I have not heard of the " house smells like mac and cheese" thing before but the rest of the symptoms your describe are all very typical of those who have celiac disease.

Have you been diagnosed with celiac disease and if so, why is your GI doc putting you on a gluten challenge?

And if you have not officially been diagnosed with celiac in the past, did you already put yourself on the gluten challenge? Is that why you are doing a gluten challenge now, that is because you now want to get tested and you need to be eating gluten?

A little more information would be helpful.

Elisabeth Hollis Newbie
Elisabeth Hollis
Posted
  • Author

Hi. No I have not been diagnosed. I have had really bad diahrrea for years. My last serology came back neg but I am still quite ill. He thinks I was not eating enough gluten before test or possibly Cvid with all autoimmune.  He is then going to do a small bowel biopsy. He thinks I may have gluten sensitivity but how I am feeling something isn’t right. I have had to push for this because here in Australia it is very hard to get done through Medicare. 3 year waiting list. And he is being very sceptical and I feel he thinks I am imagining it. There is not much info here and then I found celiac.com. Thank you for answering me, it sounds strange the smell thing. The dizziness and brain fog came first,then the bad headache and then this smell. I thought it was bad rubbish first, cleaned house then realised I went to bed with it. I have cpap and when I put mask on it was still there and every time I lie down I get dizzy and feel really nauseous. Last year my endo gave me a bag of iron, he said I had microcytic anemia but that was before celiac was suggested. This has been going on for years. My doc just kept shrugging me off and saying I have ibs or gluten intolerance. Otis so frustrating ! I am not backing back now. In a few weeks he is going to retest serology thanks

trents Grand Master
trents
Posted

You could also have non celiac gluten sensitivity (NCGS) in which you experience most or all of the same symptoms as celiac disease but there is currently no test for it. So, your tests would be negative. But to confirm that diagnosis, you would need to have a biopsy done. With NCGS there will be no villi damage in the small bowel.

Elisabeth Hollis Newbie
Elisabeth Hollis
Posted
  • Author
4 minutes ago, trents said:

You could also have non celiac gluten sensitivity (NCGS) in which you experience most or all of the same symptoms as celiac disease but there is currently no test for it. So, your tests would be negative. But to confirm that diagnosis, you would need to have a biopsy done. With NCGS there will be no villi damage in the small bowel.

Yes doc seemed to imply that. But would I get such severe symptoms if it was NCGS?

trents Grand Master
trents
Posted

Yes, symptoms are largely the same as with celiac disease. And the antidote is the same: Life-long gluten free eating and not cheating on the diet.

Elisabeth Hollis Newbie
Elisabeth Hollis
Posted
  • Author
4 minutes ago, trents said:

Yes, symptoms are largely the same as with celiac disease. And the antidote is the same: Life-long gluten free eating and not cheating on the diet.

Thanks for that. I just got my appointment for gastro on 6th of Jan. this is going to be fun almost as good as covid lol

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    • Wheatwacked
      3 year old gluten intolerance?

      By Wheatwacked · Posted

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      3 year old gluten intolerance?

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      Thank you for all that helpful info, does that mean it’s not a good idea to do what I’m doing? Or since it’s only been a week should I see if I could get her tested now? Would it show up still since it hasn’t been long if they tested her?
    • trents
      3 year old gluten intolerance?

      By trents · Posted

      Welcome to the forum, @Nicbent35! There is something called gluten withdrawal that might have come into play here as well. As strange as it might sound, gluten has some addictive properties similar to opiates and some people feel physically and emotionally out of sorts for a few weeks after it is removed from their diet. There are two recognized gluten disorders, celiac disease (aka, "gluten intolerance") and Non Celiac Gluten Sensitivity (aka, NCGS or just "gluten sensitivity" for short). They have symptoms that overlap. The difference is that celiac disease is an autoimmune condition that causes inflammation in the small bowel lining and, over time, damages the lining of the small bowel. There are specialized blood antibody tests that have been developed for diagnosing celiac disease. NCGS, on the other hand, does not damage the lining of the small bowel. No tests are yet available for NCGS. Celiac disease must first be ruled out in order to arrive at a diagnosis of NCGS but NCGS is 10x more common than celiac disease. Please be aware that if your daughter is on a gluten free diet, the celiac disease blood antibody tests will not give valid results. For the testing to be valid, she would need to have been eating normal amounts of gluten for weeks/months leading up to the day of the blood draw. If you remove gluten from her diet as an experiment, valid testing can be done later on but she would need to be restarted on gluten for weeks/months ahead of the blood draw. Also be aware that once on a gluten free diet, restarting gluten can produce more severe symptoms because all tolerance may have been lost.
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