While I had good reason to believe that I did not have MS I was a little bit prepared to hear that possibility due to symptoms but this wasn't on my radar at all so it really did kind of shock me. Then the more I read, the more it seems the only relief for the neurological issues is decompression surgery which sounds pretty unpleasant. I'm just trying to go on as I have been until further testing and save the worry. No use stressing over something that may end up not being necessary!
When the Dr.s find something that could be causing your symptoms, it's a little bit of relief knowing you're not just imagining things, which is followed by the shock of being DXed with such a thing! Did your symptoms come on suddenly, or have you had them for some time? I'm curious because I've been having neuro symptoms too.
If you have to have the surgery it will be uncomfortable, but you will heal. I had a spinal surgery on the disks in my neck. Ruptured disks were causing pressure on my spinal cord. They removed two disks and put in a piece of bone to replace them, followed by a plate screwed into the bones to hold eveything in place. I had to wear a neckbrace at first, which was the hardest part of it all. Six weeks later I was doing great, with the nerve issues healing a bit slower. I would think your surgery, if you have it, might be similar?
Hi everyone, I'm new here and hope to learn what this disease is all about.....I was diagnosed 2 weeks ago and everything, gluten-free diets, the awful symptoms are really confusing to me....My doctor informed me there is such a thing as gluten withdrawals, and I've come to believe that...I feel so tired, nauseated, anxious, hungry and wired most of the time. I also continue to have frequent diarrhea.
One thing I've noticed is how expensive the gluten-free foods are...
Also 2 weeks ago I was biopsied and learned I also have skin cancer and will have to have surgery, so I guess these 2 issues overwhelm me...
In the past I've had Graves disease, Alopecia areata, and Hypoglycemia...Are all of these autoimmune diseases ?
Thanks for reading.
Withdrawl symptoms are very common. You may have some vitamin/mineral deficiencies causing symptoms too? Have your levels been tested?
Processed gluten-free foods can be expensive. Try a whole foods diet instead. Fruits, veggies, unprocessed meats, fish, dairy if you tolerate it.
Eggs are a great source of protein and amino acids. How about an omelette with hash browns on the side? OR a grilled meat, baked white or sweet potato, veggie, and salad? Nuts are a great nutricious snack.
Stew is easy and pretty ecomomical to make. Soups are easy/ecomomical too. Need something fast and easy for a snack? Grab a piece of fruit.
You can do this!
I had 2 skin cancers removed. One was on my face and required a Moh's surgery with scar correction surgery later. I've always wondered if some nutrient deficiency causes skin cancer? Get a bag of frozen peas to use as an icepack for after surgery. It will be a very lightweight, inexpensive comforting thing to have. You can reuse it over and over..but don't eat the peas afterwards. Good luck to you!
If going off gluten has you feeling better..than obviously, it doesn't agree with you?
The blood tests are wrong 20-30% of the time. Did you have the gene test? Sometimes that can show if you're likely to have a gluten problem.
I agree with the others..you are very fortunate to be figuring this out at such a young age. So many of us go undiagnosed, or misdiagnosed for years and as a result have a lot of other health issues.
I got a good lesson in how many times I touch my eyes or nose this summer when I was helping my hubby chop up jalapenos. I even washed my hands afterwards..but boy did my eye sting when I rubbed it a bit later!
Made me realize that everything I touch MUST be gluten free.
After my DX of Cliac with severe villi flattening my insomnia and anxiety started to increase..rapidly. I asked my PCP to run a blood panel to see if I was low on some vitamin or mineral that might be causing my symptoms. She asked if I was taking a multi-vitamin and I said yes. She said "then it couldn't be a deficiency."
She also said she questions my DX because I'm too old at the age of 54 to just be getting Celiac!
I had a GI run a gene test. When he looked at the report he didn't know how to read it. He saw the alpha 1 and beta 1 with the additional alleles listed and since it didn't say DQ2 and DQ8 ONLY, he said it was negative. I'm actually a DQ2.2. We are more likely to have severe villi damage and complications from Celiac.
I found it safest to just make sure my cosmetics don't have gluten or soy. Eye makeup especially seems wise to have gluten-free? I tend to rub my eyes when I'm tired or stressed, and then there's seasonal allergies that have me rubbing too. Eyes are mucous membranes.
Shhh...don't tell anybody, but I've been known to get so tired I go to bed with what's left of my makeup still on too.
I just feel like checking up front and having safe ingredients takes the chance of an accidental glutening out of the mix? Less anxiety for me.
I guess we all have to make that decision for ourselves..and do what we feel is best for us?
Add me to the list of those with Ovarian cysts. As it was explained to me...in a woman's cycle a little cyst forms on the ovary and bursts when the hormones tell it that it's time to. That sends the egg down the tube to the uterus. Sometimes that cyst doesn't burst when it's supposed to, and continues to grow.
Sometimes they cause symptoms..and sometimes they don't.
I found I got achy pelvic pain on whichever side it was on, and sometimes migraines. When they finally did burst I'd feel a sharp cramping pain.
I had this going happen off and on for years. It was before I was DXed with Celiac. I don't know if there's a link, but I know a lot of Celiac women have fertility issues, so maybe this is what is happening with them?
We just can't rely on getting a blood test and KNOW that we don't have Celiac or gluten intolerance. Every test they have right now can give false negatives.
Let your body be your guide. If you or your family members feel better off gluten, there's no reason to keep consuming it!
I hope some day soon they can come up with better tests. Right now it seems like some of us "fall through the cracks" and it's hard to get the support one needs without the DX in a lot of cases.
We have to go with our gut on this one?
Maybe you're low on some vitamin/mineral that is triggering this behavior? I know chocolate craving can mean you need Magnesium. OR maybe it's a low blood sugar issue and your brain is telling you to feed it?
Have you had a blood panel drawn recently? If not, it might be good to have things checked?
I absolutely WILL NOT cheat on my gluten-free diet. It helps that I'm "as stubborn as mule" and don't waver from things once I have my mind set.
Have safe snacks stocked so you can have options when you get the urge to snack.
I watched the show and it was better than the last episode he did on gluten. I think he glossed over the topic in some areas because of the time factor? Still...he's putting the idea on people's radar. For those that aren't getting answers or relief from various symptoms from their Dr.s, they now know to mention it.
As far as the glue on envelopes..maybe the "main manufacturers" don't use gluten, but we get so much stuff shipped here from China it's crazy. There's no way of knowing what they've used. They've been busted for using LEAD in children's toys and jewelry. I HAVE gotten a gluten reaction from licking envelopes early in my DX and just won't do it anymore.
I generally buy my envelopes from the Dollar stores and they are off-brand. I just checked the box and it says Distributed by: Greenbrier International, Inc. Made in Indonesia. Can we be sure of what they use in Indonesia? I think of licking envelopes as the same as playing "Russian Roulette". I won't do it.
My soy symptoms started out as gas, then progressed to D, followed by achy joints/bones, and sometimes migraines, depending on what form I ingested and how much.
As time has gone on I react more strongly. I get lower left quadrant pain, IBS, migraines, nausea,severe achy joints, and most recently I vomit up whatever it was hiding in.
I found it in trace amounts in some of my supplements, including fish oil, multi-vitamin, E, and vitamin D.
Sometimes it goes by the alias of tocopherol or ergocalciferol.
I have found it's much easier to give up gluten. Soy is used in a lot more things!