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Medication And Symptoms

First Step

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First Step Newbie
First Step
Posted

I'm a 45 y/o female and I am pretty sure I've finally found out what's been wrong with me since my 20s. After spending the last two days sleeping on the bathroom floor, I just had to look for some answers. Symptoms: migraines, severe abdominal pain both upper and lower, chronic nausea, voracious appetite, bloating, edema in hands, ankles and feet, intermittent severe hair loss, diarrhea/constipation, restless leg syndrome/periodic limb movement disorder for which I am severely medicated (maxed out on Pramipaxole and Neurontin and it doesn't work), neuropathy, GERD (script strength Protonix (doesn't work), hospitalized several times with vomiting for no known reason, gestational diabetes resulting in loss of child full term and anorexia during pregnancy (not from lack of eating, but because no medicine could keep me from vomiting with diarrhea), gallstones and had gallbladder removed, acne (onset in late 20s and I take spironolactone to treat) long, heavy periods, debilitating tiredness, chronic joint pain, NASH (fatty liver biopsied and diagnosed), depression... I'm also northern European descent. I've never written it all down before. After reading others symptoms I started realizing what I thought were unrelated issues that they seem pretty dead on here. :( I do not have insurance and am going to begin the gluten free diet 2moro. Wish me luck! It would be nice to finally understand it's not the quality of life I have to accept.

What alerted me to this was taking my son to see a neurologist for possible seizures. The doc wanted to test for metabolic issues as they are common in children with Down Syndrome which he has. He also has a lot of my symptoms as well. A 72 hour study will be conducted before Christmas to replicate his brain activity during his nerve disturbances which are daily, as are mine. I did not know that vitamin deficiencies could effect you that way as well.

Very overwhelmed and looking for opinions and advice... Has anyone been able to eliminate medications to treat symptoms once going gluten free? The side effects are often daunting on their own.

I know it's a long post. It's been many years of frustration condensed...thanks!

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ravenwoodglass Mentor
ravenwoodglass
Posted

You do sound like you are in the right place. Is there any way you can get tested before you begin the diet? If you start the diet it will be hard to get a diagnosis without making yourself very ill if you later decide you want an official diagnosis. I can't answer for all but for me the diet did take care of my need for all the many meds I was on prediagnosis.

It sounds like your son does have insurance so do be sure to ask them to run a celiac panel on him.

Skylark Collaborator
Skylark
Posted

I hope you've figured out your issues! If you can afford it, get one of these home tests before you go gluten-free. Open Original Shared Link Once you go gluten-free you cannot be tested for celiac without making yourself sick all over again with gluten. It's good to know whether you're gluten intolerant or celiac.

I went off a lot of psych meds gluten-free because the gluten affected my mind. The diet can make a huge difference if you're celiac.

First Step Newbie
First Step
Posted
  • Author

You do sound like you are in the right place. Is there any way you can get tested before you begin the diet? If you start the diet it will be hard to get a diagnosis without making yourself very ill if you later decide you want an official diagnosis. I can't answer for all but for me the diet did take care of my need for all the many meds I was on prediagnosis.

Thank you for responding. Oddly enough I was looking up why I immediately fall asleep after eating and it can be a very small meal and it linked me back to this site. Seems like it is destined...lol.

No to the test. I've been laid off for over a year. Right now I don't feel well enough to do anything. The only real treatment is diet anyway, correct?

Do you know what is the worst damage caused by someone failing to follow the gluten free lifestyle. Kind of wondering if I've caused long term damage...

First Step Newbie
First Step
Posted
  • Author

I hope you've figured out your issues! If you can afford it, get one of these home tests before you go gluten-free. Open Original Shared Link Once you go gluten-free you cannot be tested for celiac without making yourself sick all over again with gluten. It's good to know whether you're gluten intolerant or celiac.

I went off a lot of psych meds gluten-free because the gluten affected my mind. The diet can make a huge difference if you're celiac.

I had no idea there was a home test! Ordering it now!!!!

THANK YOU!

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      Gluten related ??

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    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Gluten related ??

      By Colleen H · Posted

      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      My only proof

      By AlwaysLearning · Posted

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
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