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I Really Don't Know What To Do.
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7 posts in this topic

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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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?

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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.... :)

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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.

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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.

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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?

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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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    • I had quite a few of the medical problems that you have before I figured out that gluten was the problem. I can’t do basic math or writing when I eat gluten also I get depressed, irritable, low energy, etc. The best route to go is to do an elimination diet and monitor how certain foods affect you. I eliminated MSG (Monosodium Glutamate), Nitrite, and oat based on the reactions that I get once I consume them. You must be disciplined on a gluten free diet, there is not such a thing as –It is just one cookie! If you can manage to go 100% gluten-free for three weeks and you see those problems going away, you will have a good idea if that is the cause of your problems. The blood test I did after being gluten-free for two years came back negative so the doctor just make me feel that I was crazy and making things up. I have a stool test done which came back with elevated igA also a gene test indicating I have two genes that code for gluten sensitivity. My lactose intolerance went away too, eating a lot of cheese now. Rash in arms? gone, Brown spots in teeth? Gone, Intestinal noises? Gone, Lack of bladder control? Gone, Constipation? Gone, and a lot others.   
    • Oh you're most welcome!  Another thing --- no steroids, oral or injected for 2 months prior to a dh biopsy. Lay off any topical steroid creams for 2 weeks prior. Really, stand your ground with them. It would also be great if you can get a friend or family member to go with you in case they take the biopsy from somewhere that you can't see such as the back of your neck. Your friend/family member can watch to make sure they don't take it directly ON a lesion. Do you have a primary care doc? You can also go to that doc & ask for a full celiac panel PLUS an eTG or TG3. 60% of people with dh test negative on the celiac blood panel but maybe you're one of the 40% who will test positive. It's worth a shot.
    • Thank you so much for responding, it's so hard to go on this journey of questions and Drs. I really appreciate the time you took to respond. God bless you 💖
    • Do you have copies of your blood test results? Can you post them? Don't forget to list the reference ranges. Is the TTG the only celiac test they did?  Do you have a copy of your pathology report? Get it if you don't. How many biopsies did they take & from what areas? Were you eating gluten right up until the biopsy?
    • I got them on the back side of my knees too. All the literature points out knees & elbows but doesn't mention the "behind the knee" portion of your leg. I eventually got them ON the knees itself but that was one of the last places to present. I also got them on the inside bend of my arm instead of the elbow and just like the knees, it eventually presented on my elbows. Not to be forgotten; the literature also states it can present anywhere on the body. If you found those links I've posted about how a dh biopsy is done correctly then print them out & take them with you to SHOW them. Any derm should be able to follow the directions or they should turn in their license.  As to them saying herpes, well duhhhhhhhhhhhhhhhhhhhh, dh does have a herpes like presentation. That's why they call it dermatitis herpetiformis! Remember, they work for YOU, not the other way around. Insist. Make sure you're still eating gluten. Let us know how it goes. The best of luck to you!
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