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Very Discouraged

mm&j

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mm&j Apprentice
mm&j
Posted

It is Sept. 9th. I know I got some gluten, (very little) at the middle to end of July so that is over 6 weeks ago and I am still experiencing numerous symptoms. There seem to be a string of things that happen to me. I'll try to put it briefly...first intestinal problems, then the skin rash on elbows and behind knees, followed by extreme fatique, almost like I have been drugged, flu-like symptoms, cold sores all over my mouth and tonque, now I am experiencing extreme bone pain and achiness and so depressed after more than a month of this that I am so irritable that I can't stand myself and don't know how my family can. Each symptom lasts at least a week, some overlap, but it is always this seemingly never-ending chain of symptoms. Does anyone else experience anything else like this. I was diagnosed a year and 1/2 ago and probably been gluten-free for over a year with the exception of the accidental times that cause so much distress. Thanks for your time.

mm&j (Susie)

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mm&j Apprentice
mm&j
Posted
  • Author

Can I add that I am so depressed and feel so hopeless that I am in tears every day? :(

ShayFL Enthusiast
ShayFL
Posted

I have heard that some people respond violently when glutened. You may be one of them.

The best you can do is cut out the dairy for a month or so. Eat simple foods cooked at home: meats, eggs, veggies, fruits, safe nuts & seeds and go easy on the grains (even gluten-free ones) and processed foods. Stick to whole foods.

Drink lots of water.

Get plenty of rest so your body can repair itself.

Get some sunshine.

Consider "Intestive" or "Sea Cure" to speed healing.

mymagicalchild Apprentice
mymagicalchild
Posted
Can I add that I am so depressed and feel so hopeless that I am in tears every day? :(

Yes, you may add that thought, but "hopeless" is not good, MM&J. Not good at all. Which you already know.

I'm confident one of the experts on this website is all set to give you some great advice and comfort. Your physical symptoms sound like a combination of problems, but your despair sounds like it comes from a woman with the world on her shoulders and she knows she doesn't have the strength to carry it.

Are you on extra-virgin coconut oil, 3 tablespoons throughout each day? Try googling "coconut oil and candida" to see if there's any "light at the end of the tunnel" for you there. Candida goes hand-in-hand with Celiac disease and it has serious side effects.

I'm just a fellow-sufferer out here feeling really bad for you. My advice: You, Girl, need a vacation! You need to be taking care of YOURSELF or you won't be able to take care of anything or anyone else.

I would have a really good cry and then I'd head for the ocean. Someplace where I could hear the surf all night long. No cell phone. No email.

Get family members or friends to take over that "world" for awhile and go to your healing place. Go find your hope!

GlutenGuy36 Contributor
GlutenGuy36
Posted
It is Sept. 9th. I know I got some gluten, (very little) at the middle to end of July so that is over 6 weeks ago and I am still experiencing numerous symptoms. There seem to be a string of things that happen to me. I'll try to put it briefly...first intestinal problems, then the skin rash on elbows and behind knees, followed by extreme fatique, almost like I have been drugged, flu-like symptoms, cold sores all over my mouth and tonque, now I am experiencing extreme bone pain and achiness and so depressed after more than a month of this that I am so irritable that I can't stand myself and don't know how my family can. Each symptom lasts at least a week, some overlap, but it is always this seemingly never-ending chain of symptoms. Does anyone else experience anything else like this. I was diagnosed a year and 1/2 ago and probably been gluten-free for over a year with the exception of the accidental times that cause so much distress. Thanks for your time.

mm&j (Susie)

Yes The same thing happens to me. I have all kinds of symptoms that far exceed the intestinal issues. Depressed where I cry at night and I am a guy. Skin rash, achy joints and bones, hurt from head to toe, my head feels like its heavy on one side of my face, and those are just a few. I was diagnosed on july 14th and been on gluten-free diet ever since. I'm sure that I am still getting some in my diet somewhere. I am to the point of just going vegan for a while till I figure it all out. Cross contimination and where gluten hides. A lot of days I feel like there is no hope.

mftnchn Explorer
mftnchn
Posted

It IS really hard at first to find all the sources of gluten. Personal care products and kitchen pans and utensils need to be considered. Is your household gluten free?

If you are pretty sure that is not the problem, could be you are one of us who needs to be stricter and remove some other things. Soy, milk, major allergens, grains, nightshades, legumes, etc. It's a lot of work to figure it out and there are lots of ideas on the forum about it.

If things don't improve you might try the intro diet and first stage or so of the SCD diet. If you do that you can add one food at a time and have a pretty good elimination diet plus it might do the trick to help with gut healing.

With villi damage we can't make lactase to digest milk, and also some other enzymes to digest other carbs can be lacking. Even after two years of healing the levels of these are typically lower than normal. So my guess is for some of us, we really lack these and just don't handle carbs very well. That's me for sure...and the SCD is really working for me. Wish I had started a year ago or more.

GFinDC Veteran
GFinDC
Posted

I get various symptoms too. Can't sleep for days wich I attribute to my thyroid acting up due to glutening. I am planning to see a doctor for more thyroid tests soon. I guess what I am saying is that if you have an associated condition, then your symptoms can flare in that related condition. For me I tend to get hyperthyroid, but am usually hypothyroid. At least that's how I interpret it.

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lobita Apprentice
lobita
Posted

So sorry you're going through this! I got glutened this winter, and to make matters worse, I got the flu at the same time. I was sick for two months straight. But the real kicker was that I was going through a personally stressful time.

They've done recent studies on how stress can make allergic reactions worse (Open Original Shared Link), and I'm sure that that goes for gluten reactions as well.

If you've been really stressed out, take time out for yourself and do something fun.

Also, make sure you're getting enough Vitamin D. I know that I wasn't this winter, and when I started indoor tanning (on a whim), I quickly started to feel better...but the whole tanning thing is not something that I'm saying is good for everybody, it just worked for me.

Good luck!

mstrain Rookie
mstrain
Posted
It is Sept. 9th. I know I got some gluten, (very little) at the middle to end of July so that is over 6 weeks ago and I am still experiencing numerous symptoms. There seem to be a string of things that happen to me. I'll try to put it briefly...first intestinal problems, then the skin rash on elbows and behind knees, followed by extreme fatique, almost like I have been drugged, flu-like symptoms, cold sores all over my mouth and tonque, now I am experiencing extreme bone pain and achiness and so depressed after more than a month of this that I am so irritable that I can't stand myself and don't know how my family can. Each symptom lasts at least a week, some overlap, but it is always this seemingly never-ending chain of symptoms. Does anyone else experience anything else like this. I was diagnosed a year and 1/2 ago and probably been gluten-free for over a year with the exception of the accidental times that cause so much distress. Thanks for your time.

mm&j (Susie)

I could be way off base with this, but perhaps something else is occuring along with your being glutened. My body was aching for weeks - i finally went to my GP and had blood work done - I had both Lyme's disease and parvovirus. According to the blood work my doctor estimates that I've had Lyme's for 3 - 4 months! I just finished a month's worth of antibiotics and feel much better. I see you live in PA - how prevalent is Lyme's where you are?

mftnchn Explorer
mftnchn
Posted

Michelle, you could be right. And HOW LUCKY YOU ARE to have caught it this early, even though not early enough to eradicate it before it takes hold in the body.

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