I Want My Pre Gluten-Free Life Back

[KristenS]

I had NO gi symptoms prior to being diagnosed with Celiac. In fact, I had a rock solid stomach and never had tummy issues even when sick etc.

I have been Gluten Free for 90 days and in those 90 days I have gained 15 lbs (have never been this fat in my life), have worse acne then when I was a teenager, have severe joint pain, wake with swollen hands face and feet, so much so that I can't pick things up. I went outside yesterday for an hour wearing leather gloves and fleece mittens and my fingers got so cold they were purple and I feared frost bite.

And for the first time yesterday I got glutened by some thai food. I then spent 5 hours alternatingly vomiting voilently, and spending the rest of the time on the toilet (or worse, being on the toilet with a bucket between my knees). I have never in my life been so sick. My body was convulsing and I couldnt even move. It was worse than the flu, and worse than food poisoning. It was the most miserable night of my life.

So riddle me this. HOW IS THIS A GOOD TREATMENT?! The side effects of my treatment are WORSE than the problem! (I had iron deficiency anemia). I was essentially fine before, and now my life is a living hell. This is a miserable exhistance, and I dont know how I am supposed to be happy with this, or how I am expected to stay this course. My daily life was MUCH better when I ate gluten, this is now a miserable exhistance. I want my old life back.

[DutchGirl]

I'm sorry that you are going through all of this! I wish I had advice for you but I felt MISERABLE before going gluten free and I am just starting to feel better. I hope someone on here has some answers for you!

[mushroom]

WOW!!! That is a truly revolting development and I don't know what to say. It is so totally beyond my experience and I am so sorry this is happening to you.

My first suggestion would be to chuck out any processed gluten free product, which will undoubtedly contain different starches, grains, etc., than what you have been used to.

Be very kind to your stomach. Do not eat raw foods, only soups, broths, things like sweet potatoes, rice, applesauce, well-cooked vegetables, white fish, chicken. See how big a repertoire of foods you can build up which do not seem to bother you. Do not eat for now anything that causes a reaaction. Stay away from cabbage and beans and stuff like that, maybe also dairy. Try things like omelettes and scrambled egg. See if that helps.

[nvsmom]

I'm sorry that you are feeling so poorly. No fun at all... but I truely doubt that your symptoms are all from celiac disease. The acne, joint pain and swelling,weight gain, and cold intolerance sound a LOT like Hashimoto's or even a different rheumatic disease. I went through something like that after I had been gluten-free for 2 months: my hair was falling out, my joints in my arms hurt to do simple things, I was extra fatigued... it was all around the time I started taking hormones for my hypothyroidism. I think the change in hormones caused a worse Hashi's flare up OR another autoimmune disease was triggered into acting up (I suspect lupus). Because I had already been gluten-free for two months, i didn't think going gluten-free caused my increased symptoms but I can see how it might appear that way.

Stay on the gluten-free diet. there is absolutely nothing in wheat, barley or rye that is crucial to our good health, in fact even for completely healthy people it is best to limit those foods. I can't think of any reason that being without those three foods would cause a health decline. On the other hand, many people discover other health problems once a different health issue (like celiac) is under control. It's almost like the body relaxes a moment and then allows this other problem to express itself.... kind of like how it is so common to get sick when you start a vacation.

I suggest getting your thyroid tested. Request a TSH (should be near a 1), TPO Ab (should be next to nothing), Free T4 and free T3 (should be in the upper 50-75th percent for your lab's normal range). To me it sounds like your thyroid is under attack.

Other things to ask your doctor about might be Raynaud's, lupus and even rheumatoid arthritis. You might want to get your vitamin levels rechecked too since you were so badly malnourished just a couple of months ago.

Best wishes to you. i know it's tough when you get thrown a curve ball just when you think you should have it all figured out. I hope you find answers soon. Feel better.

[KristenS]

Thank you everyone for your responses. I hadn't even considered that I could have more than one thing wrong with me. I just feel so disheartened and alone. My family doctor told me it was all in my head and that I should consider anti depressants. It's just hard going from feeling fine to having my body revolt on all aspects.

I have been anal retentive with being gluten-free and the glutening yesterday I believe was from a Thai curry I ate that most likely had some oyster sauce in it. I just never expected such a strong response from being glutened. Man was my body mad! I have an iron infusion on Tues, and my GI doc is on rounds that day in the GI ward, so I will definitely get a nurse to made sure she comes to chat with me.

Thanks for listening guys, it makes me feel less alone in this!

[Takala]

I fear you did not have a gluten reaction to the Thai food, but, good old - fashioned, severe food poisoning from those symptoms. Or worse, you may have had both. You cannot get much sicker than that. There are a lot of bad viruses going around this year.

I am so sorry you have not figured this out yet, can you please tell us exactly what you are eating for each meal and snack and taking in medications, because if you're reacting this way, you're definitely getting trace glutened, badly. Are you in a mixed household with gluten- eaters ? I also would guess that you have a big time reaction to another food which you have not discovered yet. The acne.... that's a sign of glutening for me. This long term malnutrition from celiac causes havoc with the internal organs and hormones.

What about dairy ? What happens when you cut that out of your diet ? What about using organic dairy, instead of regular ? What about trying to use organic chicken instead of regular ?

Are you eating a lot of gluten free commercially manufactured foods ? Are you good with all their ingredients ? Sounds like "not."

Do you react poorly to soy products such as soy proteins and soy flours ?

Are you one of us "oat reactors?" What a freaking nuisance that can be, because a lot of commercially made gluten free flours and foods are "manufactured in the same facility as... "

You may have to go to a grain free diet to get this under control, at first, such as the SCD or a Paleo type, or a sort of Paleo- cheat with a bit of brown rice added. Before you scream "NO !" at me, if by eating that way you start to feel dramatically better, you quickly get really fond of it. Then you can slowly try adding back in one major food at a time, to see how you react.

I know that you think you would not be sick if you were back on full gluten, but this sort of overkill reaction is what happens when you get so run down from being malnourished by having your gut lining destroyed, and then having a leaky gut letting all these foreign proteins running around in your bloodstream. Then, when you get a sort of biohazard insult double whammy gluten reaction from a restaurant experience, it's even worse. (this led to my #1 Restaurant Rule - Never, ever eat out the evening before you anticipate something nice you were really looking forward to, or a holiday trip the next day. Ever. Even if you've eaten there safely before. Especially if there are lots of small children running around loose with parents ignoring them ("germ vectors") and it's flu season. Just.... don't. )

[1desperateladysaved]

I am sorry you are going through this. I have been through it, and I have come to consider any reaction a good one. I also am thankful that my "no GI symptoms" changed to having symptoms as it helped me to define what foods might be causing me problems. You are moving from a mal nourished to being better nourished. That is a good thing.

Usually my best day yet comes just after the worst ones. Hang in there. You may not feel like it now, but you are headed in the right direction for you.

Get well***

Diana

[Lisa]

Thank you everyone for your responses. I hadn't even considered that I could have more than one thing wrong with me. I just feel so disheartened and alone. My family doctor told me it was all in my head and that I should consider anti depressants. It's just hard going from feeling fine to having my body revolt on all aspects.

I have been anal retentive with being gluten-free and the glutening yesterday I believe was from a Thai curry I ate that most likely had some oyster sauce in it. I just never expected such a strong response from being glutened. Man was my body mad! I have an iron infusion on Tues, and my GI doc is on rounds that day in the GI ward, so I will definitely get a nurse to made sure she comes to chat with me.

Thanks for listening guys, it makes me feel less alone in this!

Hey Kristen! Sometimes we need to look outside the box....could it be that you might have had a virus, the flu or the "bug" of the week?

As others have stated, try a "clean diet" ...only whole foods, meaning fruits, veggies, meat, fish...shop on the outside aisles. Try this for about a month or so and see how you feel. A food diary can be helpful too.

The gluten free diet is tough to grasp in the beginning. It took me about six months of intense learning to find my way. Hope you fell better soon.

[KristenS]

I dont regulatly eat any processed foods, and our kitchen/house is completely gluten-free. I am still eating dairy, no oats. Regular day subsists of coffee yogurt and 2 pieces of fresh fruit for breakfast, left over dinner for lunch, and home cooked meal for dinner. Ie baked salmon with quinoa and 2 veg. Snacks are fruit, yogurt and nuts (per my nutritionist) We buy organic when possible, and all meats from our local butcher. Source corn tortillas from a local Tortilleria and use that as my substitute for all bread. I am a big foodie, and have always cooked all our meals from scratch, there's ner a processed food in our house. I take a gluten-free birth control, but that's my only meds. Lived a normal healthy life until all this went down. Don't think it was food poisoning, as hubby ate the same food as me all day. Could be a bug, but other than being severely dehydrated and tired today I'm fine. I feel like I wake up with some new weird issue every day. It's like celiac roulette.

[pricklypear1971]

I don't know the technical term for it (in absence of a virus, other intolerance) but sometimes going gluten-free seems to strip away your body's equilibrium.

Kind of like ripping the scab off an infected wound and when exposed to air, and pressure relieved...puss and other nasties start oozing out and it hurts likes a sob.

And then you've got to cure the problem.

So, there it is. You may feel like total crap for a while til you feel better. You may have to deal with some other health issues. That doesn't mean going gluten-free caused them, it means gluten-free exposed them. It's different.

And if you do have other health issues, it was just a matter if time. They would have surfaced. Maybe not the same way, but they would have. You may have already had symptoms of the other issues, you just considered them "normal for you".

All if that said, I sincerely hope you have a virus and this passes.

[chip]

I'm sorry that you are feeling so poorly. No fun at all... but I truely doubt that your symptoms are all from celiac disease. The acne, joint pain and swelling,weight gain, and cold intolerance sound a LOT like Hashimoto's or even a different rheumatic disease. I went through something like that after I had been gluten-free for 2 months: my hair was falling out, my joints in my arms hurt to do simple things, I was extra fatigued... it was all around the time I started taking hormones for my hypothyroidism. I think the change in hormones caused a worse Hashi's flare up OR another autoimmune disease was triggered into acting up (I suspect lupus). Because I had already been gluten-free for two months, i didn't think going gluten-free caused my increased symptoms but I can see how it might appear that way.

Stay on the gluten-free diet. there is absolutely nothing in wheat, barley or rye that is crucial to our good health, in fact even for completely healthy people it is best to limit those foods. I can't think of any reason that being without those three foods would cause a health decline. On the other hand, many people discover other health problems once a different health issue (like celiac) is under control. It's almost like the body relaxes a moment and then allows this other problem to express itself.... kind of like how it is so common to get sick when you start a vacation.

I suggest getting your thyroid tested. Request a TSH (should be near a 1), TPO Ab (should be next to nothing), Free T4 and free T3 (should be in the upper 50-75th percent for your lab's normal range). To me it sounds like your thyroid is under attack.

Other things to ask your doctor about might be Raynaud's, lupus and even rheumatoid arthritis. You might want to get your vitamin levels rechecked too since you were so badly malnourished just a couple of months ago.

Best wishes to you. i know it's tough when you get thrown a curve ball just when you think you should have it all figured out. I hope you find answers soon. Feel better.

Actually, in wheat there is magnesium. Grains are actually nutritious. The only bad thing is the gluten usually.

[dilettantesteph]

This sounds really terrible for you. I would like to offer you some hope. It is possible that you were having symptoms but didn't know it. I had all sorts of symptoms that I had no idea were caused by gluten until I had been off it for awhile. I had obvious GI issues such as uncontrollable diarrhea which went away, but many more thing improved too. It was like I was aging backwards. I had incredible increased energy. Tasks which used to take all day would just take an hour. I used to have joint pain and weak muscles. That went away and I even did a minitriathlon. I hadn't even been able to run around the block before.

My mind was so much more clear. I play in a band and I suddenly got much better. I could read music and get the notes and rhythm right away. I was supporting the players who used to support me. They started asking me how to play difficult passages instead of the other way around. I found mistakes I had made in our taxes from years back. I was able to solve problems at work which had been a mystery before.

I felt so much better emotionally too. I had been a downer before. I was always unhappy. I thought it was natural aging. Now I have such a feeling of well being and even love for my fellow man. I really think that everyone out there not sick should be walking around smiling all the time. Good health is wasted on the healthy.

It can be hard at first to make the adjustment to the gluten-free diet. As mentioned above, you might have gotten a bug rather than been glutened. Another issue is that a small fraction of us react to much lower levels than others. It can be a bit harder for us to arrive at a safe diet. It can be done, and it helps to start with a diet of produce and unprocessed meat. Keep track of food and symptoms in a journal so that you can track sources of reactions. Skip restaurants until you get it figured out. Then you can add new foods one per week, try restaurants, try the gluten-free cookies and all that.

Meanwhile, look forward to the possibility to a new healthy life without symptoms that you didn't even know were coming from gluten. I hope that's what happens.

[cavernio]

Things you are eating (or probably eating) that I would call processed: coffee, tortillas, yogurt, cheese, quinoa (well, I consider all grains as being processed, we don't eat them as they are in the field), oils/butter.

Since you've substituted all your bread with cornbread, corn would be high on my list of things to stop. Bartfull says he reacts worse to corn than gluten. But aside from that you may also want to quit dairy.

Also, your doctor is another one of those, unfortunately common, people who believes symptoms are 'all in your head'. I quite frankly don't even know why antidepressants are still prescribed for people who are clearly depressed with no other symptoms or issues seeing as how ineffective studies show them to be, much less someone where there's an obvious starting point of the symptoms.

Can you get another opinion from another doctor? If you're canadian you could try a walk-in clinic, even multiple different times to see difference doctors.

[nvsmom]

Actually, in wheat there is magnesium. Grains are actually nutritious. The only bad thing is the gluten usually.

There is some magnesium in wheat but there is much more in greens, nuts, and seeds. ThisOpen Original Shared Link says:

Green vegetables such as spinach are good sources of magnesium because the center of the chlorophyll molecule (which gives green vegetables their color) contains magnesium. Some legumes (beans and peas), nuts and seeds, and whole, unrefined grains are also good sources of magnesium [Open Original Shared Link]. Refined grains are generally low in magnesium [Open Original Shared Link].

I can't think of anything in grains that we could get elsewhere.... But I'm on an anti-grain kick lately. LOL

[JNBunnie1]

There is some magnesium in wheat but there is much more in greens, nuts, and seeds. ThisOpen Original Shared Link says:

Green vegetables such as spinach are good sources of magnesium because the center of the chlorophyll molecule (which gives green vegetables their color) contains magnesium. Some legumes (beans and peas), nuts and seeds, and whole, unrefined grains are also good sources of magnesium [Open Original Shared Link]. Refined grains are generally low in magnesium [Open Original Shared Link].

I can't think of anything in grains that we could get elsewhere.... But I'm on an anti-grain kick lately. LOL

 

 

Actually, that's entirely true. The study that I've done over the years has only confirmed to me that

any nutrient in any grain is found in higher abundance and easier digestibility in vegetable, fruit, or

animal foods. Basically, noone needs any grains. They're just tasty. And cheap! I've been eating

entirely grain free for months. NOT CHEAP. Sigh....

[Chiana]

For several months after I started the diet, certain things got much, much worse, mostly in the hormonal department.  But about 6 months in, I started to feel better...so much better that I realized that even what I thought of as 'normal' before or 'healthy' before paled in comparison.  If you had anemia, you were not 'fine' before, and you need to remember that.  If they hadn't caught it that early, terrible things would have started to happen to you -- the things that we have all experienced here.  This includes cancer.  You should consider how lucky you are.  I wish that they had tested me when I was young and saved me years of slow decline. 

We're here for you.  Remember: Nothing is a loss.  It's a trade.

[KristenS]

I had iron infusions today, and waited several hours after to try to see my GI doc who was on rounds. Unfortunately I was turned away and the earliest booking for an appointment with her is in over a month. The attending in the GI ward told me to stick to my diet exactly as it is untill I see my doc, but the thing theyre the most worried about is the swelling in my hands, which apparently they will bring up with my doc asap. I'm exhausted from my infusions and am going to go crawl into bed and stay there as long as I possibly can.

[bartfull]

"Since you've substituted all your bread with cornbread, corn would be high on my list of things to stop. Bartfull says he reacts worse to corn than gluten. But aside from that you may also want to quit dairy."

 

SHE, Cavernio, I'm a SHE.   I really should change my screen name to "Bart's Mom" or something. Bart was my dog. When he misbehaved I used to call him Bartless as in "Bart the hopeless". When he was a good boy, I would call him Bartful as in "Bart the wonderful". And when I signed up here my brainfog not only led me to use a confusing screen name, but I even spelled it wrong!

 

Anyway, I know not everyone has trouble with corn, but a lot of us do, and it was by substituting regular bread with cornbread that I lost my "honeymoon period". I went from feeling better than I'd ever felt in my life to feeling crummy again and developing a host of other intolerances. I STILL haven't gotten back to feeling as good as I did those first few weeks, but I'm a lot better now than I was a few months in. As a matter of fact, I'm considering going back to nothing but meat and cheese and broccoli and cauliflower for a while to see if I can get my energy back.

 

Either that or I need to save some money to get tested for thydroid.  
 

[cavernio]

Sorry bartfull, I too get called a he when I'm a she. Cavernio's just Veronica and was a dumb name from school days that no one actually called me. Comes from having your name on things where letters can be rearranged. But I like it because it's pretty unique, no adding random numbers for me.

[LisaRae28]

I know this is an old post (actually from around the time I was diagnosed) but I was hoping if ya got the chance ya could update on what happened with all that? I felt like I was reading something I would have written just a few weeks ago when i might have been accidentally gluttened and I'm still having all sorts of weird stuff that seems to happen when my iron drops low even though I haven't become anemic again due to ongoing infusions... Since you're a couple months ahead of me I figured I'd see if there's been any glimmers of light at the end of that tunnel tho?

[Tbolt47]

 I quite frankly don't even know why antidepressants are still prescribed for people who are clearly depressed with no other symptoms or issues seeing as how ineffective studies show them to be, much less someone where there's an obvious starting point of the symptoms.

 

The vast majority of published ( scientific ) studies show antidepressants alone are effective in relieving the symptoms of depression vs. doing nothing. When combined with " talk therapy ", they are tremendously effective. Of the top 10 most prescribed medications, I believe # 1 is an antidepressant and several others make the list. If they were not effective ,I doubt seriously they would continued to be prescribed. Nor would the pharmaceutical companies devote the vast resources for the continued  R & D, relating to manipulation of neurotransmitters.

Conversely, you would be hard pressed to find any published scientific litature claiming probiotics and digestive enzymes are beneficial in treating Celiac. The medical profession discourages the use of digestive enzymes and does not encourage the use of probiotics in celiac treatment. They both may be beneficial, however there is very little, if any science to support this conclusion. I

[w8in4dave]

I know when I have been glutened it is worse than it was b4 I was DX'd so if you had NO symptoms. Your body is really rejecting it. Not saying thats your problem just saying it could be. 

I am wondering, if you had no symptoms before how they Dx'd you with Celiac? Just wondering. Hope you are on the road to recovery