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I Really Don't Know What To Do.

JAS2

By JAS2
in Coping with Celiac Disease

Recommended Posts

JAS2 Rookie
JAS2
Posted

Hey everyone,

4.5 weeks ago I decided to go gluten free to deal with a crazy amount of symptoms with no found medical cause (anxiety, depression, dizziness brain fog, weakness, fatigue, nausea etc). I went through crazy withdrawals, my sister did as well, but she started to feel better about 2 weeks in. I however never really felt better. I did end up with a kidney infection in there so that probably didn't help. After taking to my naturopath and dietitian they both said because I hadn't seen a major improvement in 4.5 weeks I should not worry about consuming gluten. They advised me to eat to stabilize my blood sugar and told me to go back to gluten. Yesterday I ate a chip, a cracker and a pretzel. I also started my new blood sugar diet. Last night I felt more anxious then usual and today I have felt depressed and out of it. I ate a bit of cake and a bite of gluten soup today and tonight my stomach feels a little off. It is very noisy and I am nauseous. I am still on meds for the kidney infection, but I don't think they made me feel like this before. I don't know if I should go back to gluten free or give it a few more days. I am worried because we are leaving for florida next weekend and really don't want to be feeling crappy. What should I do????

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JNBunnie1 Community Regular
JNBunnie1
Posted

It sounds like you have a pretty long list symptoms that could most certainly be

due to gluten intolerance/Celiac. One month really is not long enough of a test

to see whether or not being gluten free affects you, especially with something

as serious as a kidney infection happening concurrently. It is so easy to replace

gluteny things with gluten-free ones that I just don't see how being gluten free

could affect your blood sugar. Have you been entirely grain-free for this month,

or have you been using replacement products like pasta, bread, bagels?

mushroom Proficient
mushroom
Posted

A three-month gluten free trial period is normally recommended because not everyone starts feeling better right away. Those with mostly GI symptoms often show improvement the fastest; the neurological symptoms seem to take a little longer on average and often don't show up on blood tests.

If you felt better off gluten than on it, I would stay off it. You don't want to be feeling crappy in Florida and if you go back on it now you may well end up feeling worse than you did before. Besides which, you would have to start your gluten free trial alll over again :( if you really wanted to find out if that was your problem. You were just getting started.... :)

JAS2 Rookie
JAS2
Posted
  • Author

i did eat pastas, breads. I made muffins and scones, ate cereal and rice cakes. Almost everyone I spoke with said you should feel better in 2-3 weeks. This is so confusing.

JNBunnie1 Community Regular
JNBunnie1
Posted

i did eat pastas, breads. I made muffins and scones, ate cereal and rice cakes. Almost everyone I spoke with said you should feel better in 2-3 weeks. This is so confusing.

It is confusing, you're right. Fortunately, here on the Celiac forum you've found a huge community of

people who can help you by sharing their personal experiences. A lot of times, that can be more

helpful than what one doctor with limited experience can do for you.

If you've been using the gluten-free replacement products, there is NO reason whatsoever that you

would somehow 'need' gluten-containing foods to add carbs or starches to your diet to control your

blood sugar. I would seriously question whatever doctor told you this. Hopefully someone else will

jump in if I'm off-base with that.

I would strongly urge you to return to the gluten free diet. It's clear from your post that you're feeling

worse since you added gluten back in, and that's pretty good evidence that you need to be gluten free.

JAS2 Rookie
JAS2
Posted
  • Author

Thanks so much for the feedback and support. I was thinking at some point I would go back to gluten to get the official celiac test, but I don't think I want to. I cannot believe how crappy I feel. Last night I said ok I am going to eat a piece of toast and see how I feel tomorrow. Well I woke up this morning with diarrhea so back to gluten free I go. Just wish I knew if it was celiac or a sensitivity. Is there any testing that I can do without going back to eating gluten?

cavernio Enthusiast
cavernio
Posted

I'm dx celiac, going on 7 months, still not really better. Getting there though. Your naturopath and dietitian, while trying to make things easier for you, obviously aren't aware of how long it can take some people to feel better while being gluten free.

Were you 100% gluten those 5 weeks? Didn't eay any traces of things, or used dishes that probably have gluten on them, or ate out or at someone else's house?

No, there's not really testing you can get without going back on gluten. It's not useful to define difference b/w gluten sensitivity and celiac disease, except for what other people will treat you as (which, albeit, can be a really big difference). I read evidence everday that gluten sensitivity sounds like pretty much the same autoimmune disorder, just doesn't affect the small intestine.

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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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