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Celiac And The Flu


RP276

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RP276 Newbie

Hello all.

I've been diagnosed with Celiacs Disease, not sure that is the correct terminology though. The diagnosis was about 30 days ago with a blood test, and I will have an edoscopy in the next week or so. So the question I have is this. I have been diligent with my diet and started to feel better and stronger immediately. My sleep improved, depression lessened and as I stated I almost immediately started to feel stronger and honestly about 5 years younger. Now for the bad news. The flu swept through our home about a week ago. When I first had a sysmptom I assumed I had been glutened. When my son started throwing up and subsquently his sisters, I knew that the flu had arrived. After about 6 days of flu related diareha I had about 2 days when I felt fine again. I thought OK I rallied and I'll be fine again shortly. The weird thing is that I have not felt well. I had the 2 days of reprieve and then the diareha started again and has been with me for 3-4 days. I finally gave up and took an Amodium AD and it helped, but I fear it is just masking the symptoms. Is this normal?

In the past 5-6 years I have never had the flu or even a difficult cold. I'm healthy other than Celiacs and hereditary heart disease. Ironically I always ate really well and had plenty of whole grains in my diet. I guess I just had the wrong ones. :unsure:


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sandsurfgirl Collaborator

It may be that your body is taxed by trying to repair celiac damage and you're worn down a bit. Flu happens. It can last quite awhile sometimes.

If you are already gluten free for over a month, your endoscopy is likely to be negative because your body may have healed the damage in the spots they take biopsies from. That does NOT mean you aren't celiac. If you had a positive blood test then you have celiac. There are no false negatives.

There are some threads about the problems with endoscopies in this forum you may want to read. Honestly if you got a positive blood test and are responding well to the gluten free diet, why are you getting the endoscopy? It's likely to be negative and it's an invasive procedure. I chose not to have one. I didn't want a surgical procedure just so they could tell me what I already knew and put some more money in their pockets.

Macbre Explorer

Hello all.

I've been diagnosed with Celiacs Disease, not sure that is the correct terminology though. The diagnosis was about 30 days ago with a blood test, and I will have an edoscopy in the next week or so. So the question I have is this. I have been diligent with my diet and started to feel better and stronger immediately. My sleep improved, depression lessened and as I stated I almost immediately started to feel stronger and honestly about 5 years younger. Now for the bad news. The flu swept through our home about a week ago. When I first had a sysmptom I assumed I had been glutened. When my son started throwing up and subsquently his sisters, I knew that the flu had arrived. After about 6 days of flu related diareha I had about 2 days when I felt fine again. I thought OK I rallied and I'll be fine again shortly. The weird thing is that I have not felt well. I had the 2 days of reprieve and then the diareha started again and has been with me for 3-4 days. I finally gave up and took an Amodium AD and it helped, but I fear it is just masking the symptoms. Is this normal?

In the past 5-6 years I have never had the flu or even a difficult cold. I'm healthy other than Celiacs and hereditary heart disease. Ironically I always ate really well and had plenty of whole grains in my diet. I guess I just had the wrong ones. :unsure:

One thing you need to consider about the endoscopy is that it may not be accurate since you have been 30 days gluten free. I chose not to have the endoscopy because my doctor told me to stop eating gluten immediatly when the blood test came back positive and they had me scheduled for the endoscopy for 3 weeks later, but after talking with "veteran celiacs" I was told numerous times that the results might not be accurate since I had already started healing. Just keep this in mind.

Regarding your flu symptoms lingering....that is not unusual. When I first went gluten free (11 months ago) I had days when I would feel great and other days I felt like nothing had improved. It's a rollercoaster ride in the beginning. You might still be getting gluten and not even realize it. I was getting it from my mouthwash and body lotion. It's trial and error in the beginning. I'm just now starting to have more good days then bad....there is light at the end of the tunnel, but you have to be very strict in avoiding all gluten produts.

red island Newbie

I was always able to fight off stomach flu's, while others around me got really sick, I only ever had mild symptoms - until last winter. Then the flu would hang on for weeks. I've been off gluten for 3 months now and hopefully my poor gut has healed enough that I wont be sick as much.

And why do the docs tell you to stop eating gluten immediately only to tell you that you have to start again for the endoscopy? I just had my scope this week, my GI doc told me he would not ask me to do the gluten challenge because my reaction to being cc'd was so severe - he says if it turns out to be non-diagnostic we can decide where to go from there, but at least he will know how things look in there.

sa1937 Community Regular

And why do the docs tell you to stop eating gluten immediately only to tell you that you have to start again for the endoscopy? I just had my scope this week, my GI doc told me he would not ask me to do the gluten challenge because my reaction to being cc'd was so severe - he says if it turns out to be non-diagnostic we can decide where to go from there, but at least he will know how things look in there.

You have a smart doctor!!! In spite of the fact that you may have a negative biopsy, he can still test you for other things.

My doctor was also ready to diagnose me after a high positive celiac panel. I did stay on gluten until I had the endoscopy because I knew my adult daughter had a problem with gluten so I felt I should go the full route hoping I'd get a positive diagnosis...and I did.

Several months later she had the blood tests and also had high positives on her celiac panel. However, she just went gluten-free and skipped the endoscopy.

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    • Jsingh
      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
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      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
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      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
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