Illness Has Come Over Me - Ending the Gluten Free Experiment?

After approximately 8 months of being sans gluten (at least in my diet), I'm faced with the decision of whether to continue, or conclude it early. I had originally planned to keep it going until Autumn this year, after getting some work done and pushing for some progress over the summer, ideally in the form of doctors seeing my plight and saying, 'Yes, I think you're absolutely right and sick as a dog!' (What daydreams.) But now, I just don't know if I can continue. For 7 months I have been eating the same things, putting up with the blue thread, brown poop-like pieces and golden gloop I have found on them, and just can't tolerate it any more. My choices in the gluten free aisle are limited by fibre content (I don't tolerate much fibre and a lot of the GF bread alternatives here seem to be loaded in the stuff), and suspicious ingredients that I have possibly reacted to, such as cornflour, quinoa, oats, seeds etc. Only 2 foods got the check mark: the poopy gloopy pancakes, and Schar sweet brioche rolls.
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I had a 2-hour break from writing this entry as illness has hit me HARD today. I'm freezing, but keep coming over hot and sweaty; my head is light; I've been to the bathroom twice; my allergies feel more like a cold today, and I feel overall rundown and very weak. I can only think of 2 suspects: Hormones, as my skin is angry and uncomfortable with acne; and the free from crackers I've been eating for breakfast since yesterday. I can see no suspicious ingredient except for soya bran. Honestly, I don't know what soya bran is, but I know soya is a devil. I have no clue about bran. I've never had an all-over flu-like reaction to a food before, though. Feeling ill, I took my 'stomach pillow' and phone to my room, and immediately burst into tears.

I can't do this alone without a doctor's assistance anymore. I have cut out every food on earth and all I'm left with is potato, carrots and swede. Can I eat potato for breakfast, lunch and dinner? I hate food, really despise food, but oh no SHE HATES FOOD SHE HAS AN EATING DISORDER. 'DoEs pARt oF YoU WaNt tO bE SkInnY?' All I want is to speak to a doctor that doesn't think I have anorexia, that doesn't think I'm a psychological case, and doesn't shrug their shoulders telling me I've been through everything and simply nobody knows anymore. I want someone to look at my printed symptoms list - cut down to one page for their convenience! - and consider them as a whole. I feel like this isn't a huge ask.

I don't know what to eat for breakfast tomorrow. I have no pancakes. I refuse to eat the crackers. I guess I'll have the GF wheat waffles again. I can't tell whether I'm reacting to the GF wheat or not, because I've also tried free from crackers with soya bran this week. I probably should have waited a few days before eating the crackers. But I just didn't want those darned waffles, either. I am seriously considering the butter croissants I ate last year until I started the gluten free experiment. I feel no better gluten free - certain symptoms such as head zaps and muscular jolts started after removing gluten, but then I remember that I used to walk around the house bent double, and my back went up straighter after removing the bread. Then again, I also cut out peas, green beans and sweetcorn, possible causes of the popping gas that hasn't bothered me in approximately 9 or 10 months.

What am I supposed to do? What am I supposed to think?

I have to end here as illness is coming over me again, acid, bad head, bones hurting, and I think I have to run to the bathroom.

All I want is for someone to help me, but when all is said and done, when the symptoms have passed and the crying is over, it remains a fantasy, and I remain fighting, alone.
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Reactions: CedarHome and Wolfcub

Comments

Wolfcub
I am sorry you are having such a rotten day @PoorlyPixi Indeed I am, as I have had a few of those.
Yes we almost always end up crying. I know I do. It's just that we fill up with pain and it gets to a tipping point so tears come out. We can't take any more...
That is not such a bad thing though in itself even if it hurts while it's happening.

I wonder -could the way you've been feeling be a general "crash"? Maybe not related to food? Even though you have GI symptoms.
When I get a crash I seem to re-visit most or at least some of my initial symptoms, but now plus some extra weariness, as the body gets weary from all these onslaughts.
I know, I tried to track down if any/some foods were causing crashes, some months ago now, but nothing I ate or didn't eat seemed to make the slightest bit of difference.
Crashes often have a mind of their own. Most often related to any extra strain physical or mental though.

Just a thought. I might be wide of the mark though.

Take care and I hope things ease up for you as soon as possible.
 
P
Wolfcub said:
I am sorry you are having such a rotten day @PoorlyPixi Indeed I am, as I have had a few of those.
Yes we almost always end up crying. I know I do. It's just that we fill up with pain and it gets to a tipping point so tears come out. We can't take any more...
That is not such a bad thing though in itself even if it hurts while it's happening.

I wonder -could the way you've been feeling be a general "crash"? Maybe not related to food? Even though you have GI symptoms.
When I get a crash I seem to re-visit most or at least some of my initial symptoms, but now plus some extra weariness, as the body gets weary from all these onslaughts.
I know, I tried to track down if any/some foods were causing crashes, some months ago now, but nothing I ate or didn't eat seemed to make the slightest bit of difference.
Crashes often have a mind of their own. Most often related to any extra strain physical or mental though.

Just a thought. I might be wide of the mark though.

Take care and I hope things ease up for you as soon as possible.
Click to expand...


:hug:

I haven't been out, and I haven't seen my friends in 3 weeks, so there isn't really any reason for a crash, unless crashes also happen with no cause or exertion. It's interesting, maybe I've been stressed about a few things and the worry has caused a crash? I do think hormones are playing a big part because I have a number of white pimples on my face! Hormones always make me ill, but it's usually around ovulation, and I'm just finishing my period.

I'm cutting the crackers and trying the waffles again anyway, I have no idea. Even if these aren't problem foods, I honestly hate them, and it makes me so upset to look for foods again and again, and eat things that aren't in the least bit enjoyable, just because they don't have a problem ingredient. Sometimes I think I have to disassociate when I eat! Because they're just too sickly or sickening. I don't know how much of that sick feeling is my reflux, but still, the foods are :pem:. My family often comment about how 'limited' I am.

Thank you, I feel less alone with my struggle here, as I was crying yesterday all I could think about was how alone I am in this fight. And how tired and defeated I feel, trying to work everything out, solve puzzles.
 
Shoshana
PoorlyPixi, I am so very sorry that you are in this miserable situation. You describe it all, so well and so clearly. I wish you could get a medical person that would be as you described, someone who would listen to you and not conclude unwarranted ideas, and who would read and study your list of symptoms, and who would give some GOOD suggestions.

I also wish I knew what to recommend or suggest about your foods. That is a very discouraging way you have been living, and I send my support to you.
You deserve a lot of true support and help, and some foods you could enjoy.

Everything you wrote seems so clear to me, and easy to comprehend. You sound very sensible and aware. I very much hope for better days ahead for you.
 
Shoshana
I also want to say, that you have done a very good job, giving this diet a very good trial. It is very difficult, challenging, and hard work, and would be emotional in addition, to stick with something like that, and it has been worth your effort to try it. I am sorry you haven't gotten any encouraging results from it, but I admire your perseverance and determination to give your effort to it.
 
Judee
We have to eat very plain foods in my house because of all the allergies and sensitivities. It does get very discouraging and makes eating very boring.

We are very limited too so eat a lot of thing repetitiously which of course increases our chances of developing sensitivities to those as well. :aghhh:

Sorry you're having to go through all this @PoorlyPixi. :(
 
B
Hi
Im so sorry you are suffering. I have 2 sick adult children so Im familiar with suffering. Are you familiar with Rotation Diet. My oldest has multiple food allergies sensitivities etc. He always gets a little better on this diet.
this is one of many websites for it.
https://unboundwellness.com/how-to-follow-a-rotation-diet/
Are you familiar with the Coco Pulse test for food allergies. This is one of many sites the explain it.
https://www.rebeccawood.com/health/...st-easy-diy-food-sensitivity-allergy-testing/
I learned all this from an excellent doctor. Some medication is also helpful for symptom relief. Some of the prescription medications for Mast Cell Activation Syndrome have helped them.
https://en.wikipedia.org/wiki/Mast_cell_activation_syndrome
 
Lieselotte
I'm so sorry that you're dealing with this. It is so hard, so much work and so unrelenting. The good days are far and few between.

I've been gluten free for 8 years now, and it really does suck, but it gets easier over time. I ate gluten-free for 3 years and still had many gut problems. So frustrating. GI doc said everything looked fine, but I was still sick. I ended up going on an AIP paleo diet 5 years ago and I still do it today (with a couple tweaks). I still have gut issues, but it's as good as it's gonna get, which is much better than before!

My functional doc had told me that some people loose "oral tolerance" to where they react to so many foods. A lot goes into losing oral tolerance, here's something I found on it:
https://drknews.com/food-sensitivity-oral-tolerance/

You are not alone - we are all in this fight together!
 
CedarHome
You posted a couple weeks ago, I hope things have eased up a little for you? It's so hard to be so sick for so long, so lonely, painful and tedious.

I'm pretty leery of "gluten free" processed foods- there's often things in them I don't tolerate well. I still try them now and then but am often sorry.

I've read a lot of the nutrition resources out there and consulted with two different nutritionists- it varies so much from person to person there really is no one nutritional prescription for all.

For me at least, a modified auto immune paleo approach works better, with some time spent on a modified GAPS intro diet. I've mostly given up on "traditional breakfast foods" for breakfast. I do well with homemade vegetable/ meat soup ( cooked in batches and frozen) for breakfast. You don't mention if you're a vegetarian or vegan- that adds another level of challenge if so!

It is crazy that really sick people have to cook entirely for ourselves and not rely on any processed foods.
 
P
Shoshana said:
PoorlyPixi, I am so very sorry that you are in this miserable situation. You describe it all, so well and so clearly. I wish you could get a medical person that would be as you described, someone who would listen to you and not conclude unwarranted ideas, and who would read and study your list of symptoms, and who would give some GOOD suggestions.

I also wish I knew what to recommend or suggest about your foods. That is a very discouraging way you have been living, and I send my support to you.
You deserve a lot of true support and help, and some foods you could enjoy.

Everything you wrote seems so clear to me, and easy to comprehend. You sound very sensible and aware. I very much hope for better days ahead for you.
Click to expand...

I'm a bit late to your reply but thank you :):hug:. It really does encourage me and make me feel more positive coming here and seeing the support. I continue to have hope.... sort of!
 
P
Shoshana said:
I also want to say, that you have done a very good job, giving this diet a very good trial. It is very difficult, challenging, and hard work, and would be emotional in addition, to stick with something like that, and it has been worth your effort to try it. I am sorry you haven't gotten any encouraging results from it, but I admire your perseverance and determination to give your effort to it.
Click to expand...

Thank you!! My family have been questioning the 'point' of it for months and talk like they wish I would stop it because I'm unnecessarily limiting myself even further. Well, mostly my mum says this. I haven't gotten a doctor's opinion on it yet but I'm sure I will soon; the mental health workers I saw (very briefly) last year didn't believe there was any point because they didn't believe I had anything wrong, my negative results said it all and as far as they could see, I was suffering from psychosomatic symptoms and unintentionally exaggerating their severity. :zippit: My best friends however have seen the logic in the trial, thankfully ♥. I'm proud I've persisted.
 
P
Judee said:
We have to eat very plain foods in my house because of all the allergies and sensitivities. It does get very discouraging and makes eating very boring.

We are very limited too so eat a lot of thing repetitiously which of course increases our chances of developing sensitivities to those as well. :aghhh:

Sorry you're having to go through all this @PoorlyPixi. :(
Click to expand...


I'm sorry you have to go through this too!! You just want to throw the foods at the wall, don't you? I've actually tried disassociating from the food while eating it but it hasn't worked. I hope one day we will eat enjoyable foods...
 
P
BBB said:
Hi
Im so sorry you are suffering. I have 2 sick adult children so Im familiar with suffering. Are you familiar with Rotation Diet. My oldest has multiple food allergies sensitivities etc. He always gets a little better on this diet.
this is one of many websites for it.
https://unboundwellness.com/how-to-follow-a-rotation-diet/
Are you familiar with the Coco Pulse test for food allergies. This is one of many sites the explain it.
https://www.rebeccawood.com/health/...st-easy-diy-food-sensitivity-allergy-testing/
I learned all this from an excellent doctor. Some medication is also helpful for symptom relief. Some of the prescription medications for Mast Cell Activation Syndrome have helped them.
https://en.wikipedia.org/wiki/Mast_cell_activation_syndrome
Click to expand...

Thank you, I'll get reading :thumbsup:
 
P
Lieselotte said:
I'm so sorry that you're dealing with this. It is so hard, so much work and so unrelenting. The good days are far and few between.

I've been gluten free for 8 years now, and it really does suck, but it gets easier over time. I ate gluten-free for 3 years and still had many gut problems. So frustrating. GI doc said everything looked fine, but I was still sick. I ended up going on an AIP paleo diet 5 years ago and I still do it today (with a couple tweaks). I still have gut issues, but it's as good as it's gonna get, which is much better than before!

My functional doc had told me that some people loose "oral tolerance" to where they react to so many foods. A lot goes into losing oral tolerance, here's something I found on it:
https://drknews.com/food-sensitivity-oral-tolerance/

You are not alone - we are all in this fight together!
Click to expand...

Thank you!! It seems that gut issues and disorders are very complex and seem to need a lot of additional trials and cuts, there are so many diets too, which tells me that it's a complicated beast. And unfortunately takes an incredible amount of time. I should be seeing a dietitian maybe in the next few weeks, so it'll be interesting to hear what she has to say. If anything lol. It'll be my first hospital appointment since going gluten free so I'm particularly interested in seeing if she thinks there's any point to it or if she says 'the tests were negative so it's not celiac disease or gluten.' In which case another idea will be nice! I'm hopeful I will find something that works well for me too, thank you, all the support here keeps me fighting!
 
P
CedarHome said:
You posted a couple weeks ago, I hope things have eased up a little for you? It's so hard to be so sick for so long, so lonely, painful and tedious.

I'm pretty leery of "gluten free" processed foods- there's often things in them I don't tolerate well. I still try them now and then but am often sorry.

I've read a lot of the nutrition resources out there and consulted with two different nutritionists- it varies so much from person to person there really is no one nutritional prescription for all.

For me at least, a modified auto immune paleo approach works better, with some time spent on a modified GAPS intro diet. I've mostly given up on "traditional breakfast foods" for breakfast. I do well with homemade vegetable/ meat soup ( cooked in batches and frozen) for breakfast. You don't mention if you're a vegetarian or vegan- that adds another level of challenge if so!

It is crazy that really sick people have to cook entirely for ourselves and not rely on any processed foods.
Click to expand...

I see Paleo A LOT so I think it's in my future! I'll see what the dietitian says whenever I see her. I've read a lot about processed gluten free foods over the last year or two, people say they can slow down recovery, or stop symptoms getting better. I've thought about that a lot but don't know what to replace the GF breads with. Besides potato.

I am unfortunately a vegetarian or rather a pescatarian to be precise (I eat fish), as I went veggie in 2011 before the illness struck and it seems I can no longer digest meat. I tried introducing organic, skinless chicken in 2017. Big mistake!! Ruined me for the summer. I eat Quorn and fish. The only vegetables I tolerate are carrots, rutabaga and maybe parsnips. The others are a gassy nightmare.

I'm considering cutting processed foods and will continue to search for a substitute for breakfast - breakfast is the main problem. I guess I'm waiting to see the dietitian before I make any changes or start any new experiments. Should be sometime in June. Thank you.
 

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