Am I Still Having Withdrawals?

[sandsurfgirl]

This is about week 4 for me, however my first two weeks I got glutened several times out of ignorance about things like fast food chicken breast and some other foods that really ought to be gluten free. Also all my beauty products were glutening me so I replaced them (and cried my eyes out saying goodbye to my good friend Redken!! Been a Redken girl for many years.)

But now 2 more weeks have gone by, this time doing it right and being meticulous, simplifying my diet and I'm still feeling bad.

I do have some good times. Not whole days, but like yesterday afternoon and evening I felt great.

Still having at times (not constant, but it seems like I constantly have one of these symptoms)...

Some bouts of D

Weak and shaky in the morning

Dehydration (trying to drink a lot more water and Gatorade helps but not always)

Nauseous at time

Some dizzy spells. Many times Gatorade helps but not always.

Today I took my 2 and 5 year old kids to Disneyland. Felt dehydrated and bit weak this morning but was drinking lots of water and Gatorade. All of a sudden after we were there for a couple of hours, I felt dizzy and queasy. I threw up in the bathroom (thankfully made it there.) Felt so weak and shaky we had to leave. I do have passes thank God so it wasn't a totally wasted day. I brought my own food so I know I wasn't glutened. I did not eat anything there other than what I had brought.

My poor 5 year old son was crying his eyes out and then on the way to the car I started crying and have been crying off and on all afternoon. I can't believe how much enjoyment of life has been taken away from me. My favorite place on earth, besides the beach is Disneyland and today I could not wait to get home because I felt so awful.

I'm starting to despair that I will never feel better and that I'm doomed to feel like this forever.

[ravenwoodglass]

It was very brave of you to try something as strenuous as Disneyland so early on. Don't be too hard on yourself for what happened today. Disney is actually a great place for us from what I understand. When your feeling better give it another go and find out which food courts have the gluten free food.

You may still be going through withdrawl. Also it is hard at first and you are doing all the right things so be assured that things will get better.

Go as whole and unprocessed as you possibly can. Hopefully the good days will be much more common than the bad soon.

[sandsurfgirl]

I wanted to add that I've cut soy, dairy and nightshades for now too because they were all bothering me.

I guess it's unrealistic to think that after 40 years undiagnosed celiac I would just bounce back to normal, but I didn't think I would still be feeling this crappy at this point.

[Reba32]

unless you're drinking the sugar free Gatorade, it has high fructose corn syrup in it, and I personally would not touch that stuff with a ten foot pole! (they are apparently reformulating to take it back out again sometime this year)

I make a homemade "sport drink" with 1 litre water, (32 oz) 3 tablespoons lemon juice, 1/4 tsp salt and 1 pkt stevia. Sooooooooooooo much better for you. Half an avocado every day should help too if your electrolytes are out of whack. Lots of potassium in avocado. More than banana.

Is there a chance you could be pregnant? Or just got a bug from somewhere?

Are you eating enough during the day? Not eating enough would cause the dizziness and weak and shakies. Are you hypoglycemic or diabetic? Had you eaten anything before you got to Disneyland, or anything after you got there?

[ravenwoodglass]

I wanted to add that I've cut soy, dairy and nightshades for now too because they were all bothering me.

I guess it's unrealistic to think that after 40 years undiagnosed celiac I would just bounce back to normal, but I didn't think I would still be feeling this crappy at this point.

It's only been 2 weeks. You didn't get as sick as you have been overnight. It will take some time to heal. Are you taking any supplements? A sublingual B12 could be helpful as well as a 'Stress' vitamin with high levels of B and C. I know it is hard to be patient with our systems but they don't give us any choice. Do make sure you are checking all supplements and meds, script and OTC if you are not already.

I find Cream of Buckwheat with a hearty dose of cinnamon and a sprinkle of raw sugar to be very soothing to both my spirit and my tummy when I get nausous. If you liked Cream of Wheat you may want to give it a try.

I hope you feel better soon.

[sandsurfgirl]

unless you're drinking the sugar free Gatorade, it has high fructose corn syrup in it, and I personally would not touch that stuff with a ten foot pole! (they are apparently reformulating to take it back out again sometime this year)

I make a homemade "sport drink" with 1 litre water, (32 oz) 3 tablespoons lemon juice, 1/4 tsp salt and 1 pkt stevia. Sooooooooooooo much better for you. Half an avocado every day should help too if your electrolytes are out of whack. Lots of potassium in avocado. More than banana.

Is there a chance you could be pregnant? Or just got a bug from somewhere?

Are you eating enough during the day? Not eating enough would cause the dizziness and weak and shakies. Are you hypoglycemic or diabetic? Had you eaten anything before you got to Disneyland, or anything after you got there?

I had my fasting blood sugar recently and no diabetes thank God.

I do worry about the Gatorade. I bought an electrolyte packet at Sprouts but it gave me really BAD D. I mean bad. I think it has too much vitamin C.

I'm at the end of my period so not pregnant. It's funny I had that same thought today and then went "Oh yeah, not possible."

I was craving avocado today and I ate some at home. I guess my body knew it had that potassium. I think I'll try the homemade electrolyte solution.

I went to a doc who was a total jerk and so rude I'll never go back. But he is knowledgable about celiac. He said since I have celiac and hypothyroidism I will battle dehydration, especially during the healing process. I do feel like I'm dehydrated a lot even with plenty of water and the Gatorade.

I think I'm eating enough. I have weight to lose and haven't lost any yet. I make sure I have food at all times because I'm still SO HUNGRY all the time. I feel like I want to eat constantly, which I've read on here is normal.

We homeschool and we meet up with some homeschool friends at Disney. I didn't want to miss out on that, but it was very strenuous. I guess I have to slow down, but I feel awful when it takes away from my kids. My 5 year old is 5 going on 10 so he knows what's going on. I want to keep their lives normal and not quit doing things, even though I'd really like to just curl up in bed for about a month.

[sandsurfgirl]

It's only been 2 weeks. You didn't get as sick as you have been overnight. It will take some time to heal. Are you taking any supplements? A sublingual B12 could be helpful as well as a 'Stress' vitamin with high levels of B and C. I know it is hard to be patient with our systems but they don't give us any choice. Do make sure you are checking all supplements and meds, script and OTC if you are not already.

I find Cream of Buckwheat with a hearty dose of cinnamon and a sprinkle of raw sugar to be very soothing to both my spirit and my tummy when I get nausous. If you liked Cream of Wheat you may want to give it a try.

I hope you feel better soon.

I have to keep remembering that it really hasn't been a month because my first 2 weeks were a bust. I keep thinking it's been a month and then I remember my accidental glutenings that first 2 weeks. I hate it that they put wheat in stuff they shouldn't. Why do they have to do that?????

[mushroom]

Hi again. I can't remember if you have had all your nutrient levels checked and are taking supplements. When I was low in D, B12 and folate, I felt very tearful all the time. It's amazing what a difference the right supplements can make. Hope you get to feeling better soon, but it does take a while to come right. Take it easy on yourself.

[sandsurfgirl]

Hi again. I can't remember if you have had all your nutrient levels checked and are taking supplements. When I was low in D, B12 and folate, I felt very tearful all the time. It's amazing what a difference the right supplements can make. Hope you get to feeling better soon, but it does take a while to come right. Take it easy on yourself.

I haven't had my levels checked yet. The doc I went to who is really knowledgable about celiac didn't do any bloodwork. He was so awful to me and was in such a hurry I could barely ask him a question.

So now I switched back to my old doc who is clueless but at least nice and knows about how to treat my thyroid. But she is referring me to a GI, which we all know may be clueless too. [sigh].

I went ahead and started D and B 12 plus a sublingual B complex anyway right after I got diagnosed when I read about those vitamins on here. I'm not sure how much I should take though so it might be too low of a dose.

[Reba32]

I know it's hard for me, and I don't have kids! Just dogs. I can't imagine trying to keep up with children!

I was having a heckuva time a couple of weeks into my 8 week gluten challenge, right up until the past week or two, I had horrible dizziness, sometimes I couldn't focus on anything because it seemed to take my head too long to catch up with everything. I'm not sure why the gluten challenge triggered it, but I ended up having to get a 'script for motion sickness tablets (prescription strength dramamine basically I think it was). My prescription has run out, but the dizziness is mostly gone. Just now and again I will take an OTC dramamine.

Plus, I added more salt to my diet (I don't eat packaged foods, and I don't normally use salt on my foods, so I was sodium deficient), so I started making that home made sport drink. It seems to help some. I eat half an haas avocado pretty much every day as well. (which can also help with weight loss. it's also very healthy fats )

My blood tests last week had all my electrolytes at healthy levels. So the sodium deficiency that was on my blood tests back in October seems to have rectified. And I'm getting used to eating salt!

It takes a good long while to figure out what it is your body wants and needs. But generally if you feed it only natural foods, rather than manufactured man-made foods (which would include Gatorade ) you will probably figure it out faster. Convenience is one thing, but it's not very convenient if it's making you sick.

[DownWithGluten]

Someone mentioned...did you get enough to eat before/during Disneyland? That place can be a dizzying/weakening place just with so many lines and so much going on. and if you were afraid to eat anything, that'd make it worse.

Maybe not though. Anyway hang in there. :/

And cream of buckwheat sounds interesting, I may have to try.

[CGally81]

This is about week 4 for me, however my first two weeks I got glutened several times out of ignorance about things like fast food chicken breast and some other foods that really ought to be gluten free. Also all my beauty products were glutening me so I replaced them (and cried my eyes out saying goodbye to my good friend Redken!! Been a Redken girl for many years.)

But now 2 more weeks have gone by, this time doing it right and being meticulous, simplifying my diet and I'm still feeling bad.

I do have some good times. Not whole days, but like yesterday afternoon and evening I felt great.

Still having at times (not constant, but it seems like I constantly have one of these symptoms)...

Some bouts of D

Weak and shaky in the morning

Dehydration (trying to drink a lot more water and Gatorade helps but not always)

Nauseous at time

Some dizzy spells. Many times Gatorade helps but not always.

I'm 28 years old, and had celiac symptoms since I was 27 (I probably had it silently before that for a while), and for the past 6 *months*, I've had some of what you described, plus lots of fatigue. I haven't been weak and shaky in the morning for the past 4 months or so, but in the past 2 months, I'd been getting lots of headaches (they're mostly cleared up now). And I was constantly hungry, which slowly got better over time, with constant flare-ups inbetween improvements.

And that's without counting the symptoms of muscle spasms, chills in my legs and forehead, one scary time when the very left side of my body siezed up for a split second, itchiness at times, and feeling the skin on the front of my body as if it's very sensitive (i.e. if I wear a shirt with buttons, I can feel them easily. It's like I'm as sensitive as the "Princess and the Pea" story). I attributed those to gluten withdrawal, then later casein withdrawal (I reduced casein in December, then removed it altogether in January). It's possible that the other symptoms are also withdrawal, in a different way.

I'm younger than you, and still had withdrawal for like half a year. And while it's gotten much better - oddly in the past week in particular, where my hunger plummeted and I now eat in the 2000-2500 calorie range each day - it's not gone. Fatigue still occurs, but not as bad as before. Headaches are less potent. But I still have these symptoms, along with the withdrawal symptoms I described in the previous paragraph (though not as strongly).

I don't expect it to be gone for a while. I hate to say this, but you probably have months to go before your symptoms are gone. And I'm very vigilant about gluten and casein. (I appear to have no problem with soy, which I sometimes have, but I might ask my endocrinologist to send a test for me for that if possible next time I see him)

[sandsurfgirl]

My husband and I were going through my day yesterday trying to pinpoint things. The vomiting came on suddenly and then just went away for the rest of the day. My husband kept saying it sounds like food poisoning.

I was wondering about the chicken I made to take with me. I cooked it in the morning and while it was hot I wrapped it in foil and stuck it in my lunchbag with a small ice pack and the rest of our food. When I got it out at lunch time it was lukewarm. I wonder if I didn't cool it properly, and when it sat there for hours just warm and not completely cold, I got a bit of food poisoning?

Maybe being in healing mode, my body is sensitive enough to get sick from something mild that might not make other people sick?

I feel better today, although a bit nauseous, but not like yesterday. We're taking it easy and staying home today. I hate being homebound. I'm such an on the go type mom. We are in all sorts of groups and activities and then people ask why we weren't there and I get tired of telling them I wasn't feeling well.

[tarnalberry]

It is possible, btw, to be pregnant but still get your period (though it tends to be lighter) - particularly that first one when you just become pregnant.

Feel better soon!

[OptimisticMom42]

Did you have a good protein source (one with more grams of protein than carbs) with your breakfast? It could be low blood sugar.

[sandsurfgirl]

Did you have a good protein source (one with more grams of protein than carbs) with your breakfast? It could be low blood sugar.

I don't think I had any protein with breakfast yesterday. Can low blood sugar cause vomiting? I was very hungry when I finally ate. So far I've been grazing today and even though I have a bit of D and a little nausea, I'm far better than yesterday. No vomiting today.

I'm also finding that I feel better if I spend some time in the sun, which makes me think Vitamin D. I'm taking 1000 IU under the tongue every day. Maybe I need more. I don't want to overdo it either.

[bluebonnet]

I went to a doc who was a total jerk and so rude I'll never go back. But he is knowledgable about celiac. He said since I have celiac and hypothyroidism I will battle dehydration, especially during the healing process. I do feel like I'm dehydrated a lot even with plenty of water and the Gatorade.

that is interesting about associating dehydration with hypo and celiac and new news to me. i have been drinking soooo much water the past few weeks and still feel thirsty. and now that i look back on it i have had several dizzy episodes which i heard could be a result of dehydration. i thought it was my blood sugar. i check my blood sugar often even though i don't have diabetes. yours could actually be low?? i really hope you feel better soon!

[Reba32]

yes, low blood sugar can cause nausea and vomiting. And the shakes and dizziness.

I think breakfast should always be a balance of fats, protiens and controlled carbs. Not cereal on it's own. Most cereal will spike your blood sugars, and have you crashing too soon. Fats and protiens digest slower, and have less immediate affect on the pancreas.

Even if you don't have hypoglycemia or diabetes, blood sugar spikes and crashes are more common that people tend to admit they notice.

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[sandsurfgirl]

yes, low blood sugar can cause nausea and vomiting. And the shakes and dizziness.

I think breakfast should always be a balance of fats, protiens and controlled carbs. Not cereal on it's own. Most cereal will spike your blood sugars, and have you crashing too soon. Fats and protiens digest slower, and have less immediate affect on the pancreas.

Even if you don't have hypoglycemia or diabetes, blood sugar spikes and crashes are more common that people tend to admit they notice.

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That totally makes sense based on what I ate that day and the fact that I ate some carbs when I got home and then some protein and felt better.

[PinkZebra]

Hello, through a series of conversations with my GP, he diagnosed me with Candida. I believe, however, that it is Celiac. My maternal Grandmother was diagonsed about 10-ish years prior to her death (2 years ago) at the age of 94. She had symptoms several years prior, but we aren't sure for how long. I would like to actually have the tests done and will be requesting them at my next appointment.

I have read through these posts and am comforted by what I read in that I too, am thirsty all the time - I go through at least 4 20oz glasses of water just during my 9 hour work day and that doesn't count a cup of coffee and several more glasses at night. Does that ever go away?

I am still learning about all the gluten laden foods that this wonderful world offers. I still feel very sluggish. My headaches are lessenin. I just found out that one of the multi vitamins that I bought that my doctor told me take has maltodextrin. At first I thought it was the fish oil, but none of the other bottles mention dextin. Actually, one of them says it is Gluten free. I thoght that was nice. Does anyone take a multivitamin that you can recommend?

It does get better, right?

[sandsurfgirl]

Hello, through a series of conversations with my GP, he diagnosed me with Candida. I believe, however, that it is Celiac. My maternal Grandmother was diagonsed about 10-ish years prior to her death (2 years ago) at the age of 94. She had symptoms several years prior, but we aren't sure for how long. I would like to actually have the tests done and will be requesting them at my next appointment.

I have read through these posts and am comforted by what I read in that I too, am thirsty all the time - I go through at least 4 20oz glasses of water just during my 9 hour work day and that doesn't count a cup of coffee and several more glasses at night. Does that ever go away?

I am still learning about all the gluten laden foods that this wonderful world offers. I still feel very sluggish. My headaches are lessenin. I just found out that one of the multi vitamins that I bought that my doctor told me take has maltodextrin. At first I thought it was the fish oil, but none of the other bottles mention dextin. Actually, one of them says it is Gluten free. I thoght that was nice. Does anyone take a multivitamin that you can recommend?

It does get better, right?

Maltodextrin is safe.

There are things that have definitely gotten better like my anxiety attacks are gone and I 'm not short of breath and coughing all the time. Also I had insomnia really bad and that has gotten much better, almost gone. My tummy troubles are far from over though.

[Reba32]

if a multi-vitimin or supplement is gluten free, it will say so on the bottle label. I take a handful of vitimins and supplements every day, all of them are labeled gluten free.

[PinkZebra]

Thank you for the responses. Now I am concerned about oats. The conclusion I am coming up with is that if you are suseptible to oats, you will react; if you aren't, you won't. I have a packet of Trader Joe's oatmeal with flax every morning with a packet of splenda. Splenda's website says it is gluten free (but it doesn't say the brown sugar is gluten free) and Trader Joe's website - on their gluten free items list - does not mention an oat product at all as being gluten free. I am guessing that I may just have to delete them from my diet for a while and see what happens if I eat them again after a time without and hopefully after I have gotten my system to closer working order.

[sandsurfgirl]

I think it's like 10% of celiacs that react to oats. The tricky thing with oats is that they are often rotated in fields with wheat, so wheat can volunteer itself and get harvested in with the oats. They are also processed often with wheat and rotated in the machinery so CC can happen easily.

Personally I'm steering clear of oats until I'm fully recovered and then I'll get some gluten free ones and challenge them.