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8 Months!

kristenloeh

By kristenloeh
in Coping with Celiac Disease

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kristenloeh Community Regular
kristenloeh
Posted

I am now gluten free for 8 months as of this December and have NEVER felt better. I went to my doctors to get all of my labs we done to see if I am actually improving inside along with just feeling improved and all of my levels were NORMAL and great! Even my vitamin D, which was only at 17 right before I was diagnosed.

I only have one problem now. I still have my migraines, and they just keep getting worse. I have done all of the elimination diets, and I have figured out all of my triggers. My triggers seem to change as well though. I have gone through a few preventative meds, all of which have failed. We have now started Verapimil as my preventative, and we have upped the dosage a few times and it is finally starting to make a difference. They are pretty sure that I have chronic migraines and the type of chronic migraines I have are different than most. They are called transfer migraines, so that means i have multiple triggers, and my triggers can change and I can develop more triggers throughout my life. Yay! :P I had an MRI today, so we hope maybe that will provide even more answers as to where they may be forming and if there could be any other causes, just in case the CT scans have missed anything.

I am just SO very thankful for finally getting to the bottom of EVERYTHING that is wrong with me. Although the Celiac diagnoses is a bummer for going out and what not since I am only 25, it's just simply amazing that I feel this great. Growing up all of my life, I always thought constantly being sick and feeling miserable and being in pain were just normal and that everyone must feel that way. This is the first time in my whole life I have ever felt like a normal human being and I'm getting better each and every day!

I just thought I would post this to maybe lift people's spirits up. I know it can be hard, but there IS hope out there! It took a while after going gluten-free that I finally started to really feel the changes and feeling better. And oh boy, what a good vitamin compound will do for you. That also makes a big impact on how I feel. I take Celiact plus an additional 2,000 units of D3. It really makes all the difference, I can always tell when I have forgotten my vitamins. Well worth it.

Sorry I'm rambling! I hope this post can help those struggling with being newly diagnosed, and those who have had it for a long time and are just having a bummer of a day.

xo

-Kristen

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notme Experienced
notme
Posted

THAT is wonderful, kristen! and it's awesome of you to be encouraging - it *is* a big deal some days and especially overwhelming for people who are newly diagnosed. and yay for you getting diagnosed at an early age - you might as well be healthy and enjoy your youth! and much better if you are going to have kids.

my daughter (non-celiac) used to get "cluster" headaches similar to migraines - they told her they were caused by stress. she got rid of her ex-husband and they went away hahaha :D i get a (nothing like i used to get) headache sometimes around my pms/punctuation week.

thanx so much for this positive posting and have a great day! :)

kristenloeh Community Regular
kristenloeh
Posted
  • Author

Thanks doll! I've had migraines since I was 5 years old. Guess I am just one of the lucky ones :P

Although I was diagnosed younger, I've had the disease for well over 10 years, been suffering from all the them symptoms sine I was at least 15, but yes, at least it will only take like 3-5 years to fully heal than 10+ like it could have been.

I figure it's nice for others to hear that even though it is difficult (especially during the holidays), that there really is/can be a light at the end of the tunnel. :)

And even though last night I was glutened and feel like epic hell right now, I know it will pass and I will be right back to feeling good in a few days :D

Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

Great to hear 3 months in, thank you :)

Sorry to hear you got got, hope it improves soon.

Wish I could help on the migraines, mine are down to 1 a month since gluten-free. I had to cut out corn sesame coffee too and added B12. They got worse while I was eating lots of(junk type) gluten-free food, and with too much sugar. Stress is killer for me too, and bad posture.

Sending happy thoughts

kristenloeh Community Regular
kristenloeh
Posted
  • Author

If I only got the tummy problems I could manage okay, but I get the horrible neuropathy, tons of canker sores for weeks, and body aches, along with it just making me so tired I can't function. Thankfully I have no kids yet and trying to find a job at the moment. The Celiact has all the vitamin and enzymes you need along with probiotics as well. I have found that when I'm glutened while on the Celiact, my reaction is far more manageable (haven't been to the hospital because of glutening for months since taking it).

Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

I'm lucky mine is usually only about 5 days. Great the Celiact is helping.

Good luck with job hunting. I am avoiding it until my youngest is a school neyt year. No idea what to do then! My own business or something flexible with a sympathetic boss I guess...

Fire Fairy Enthusiast
Fire Fairy
Posted

Hi I was undiagnosed for nearly 10 years and have now been gluten-free for two years. I know exactly how you feel, it's as though you have been given your life back. I'm so sorry you still get Migraines mine were killing me but they are gone now unless I get glutenated. Honestly I firmly believed I would die soon before I was diagnosed it was that bad. I'm 38 now and have given myself the goal to try to live to see 112. ;) I gotta live extra long to make up for those 10 years you know.

With my migraines it took two triggers one of them was gluten which sadly before being diagnosed was always present. Another trigger for me is the barometric pressure. Everyone who knew me could just take one look at me and know if it was going to rain. :( You could watch me go downhill as a storm headed my way. Even worked with snowstorms. Now anytime I'm surprised by a storm I'm reminded how much I've improved over the past two years.

To me finding out I was Celiac was like opening a magic treasure chest that fixed everything. Maybe you will find a second magic treasure chest? If I could will it into being for you I would. (((HUGS)))

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kristenloeh Community Regular
kristenloeh
Posted
  • Author

Yup, found that "treasure chest" for my migraines. I have a large brain tumor actually. We don't know much right now. Won't know anything more until after the 26th....

gatita Enthusiast
gatita
Posted

Yup, found that "treasure chest" for my migraines. I have a large brain tumor actually. We don't know much right now. Won't know anything more until after the 26th....

Oh no!! How awful to hear this.... sending (((hugs))) :(

GFinDC Veteran
GFinDC
Posted

Sending some prayers your way Kristen. ((((Hugs))) too. May the Lord have mercy upon you, in Jesus name, Amen. :)

kristenloeh Community Regular
kristenloeh
Posted
  • Author

Thanks guys :)

notme Experienced
notme
Posted

o kristen i'm so sorry! praying you will have good news. it could happen - a friend of mine actually had one the size of a softball and they operated and removed it and he is still kicking. that was 25 years ago, too, so surely they have gotten better at it. xxoo kiddo

kristenloeh Community Regular
kristenloeh
Posted
  • Author

We have a bit more information. The tumor is NOT cancerous. It's about the size of my pituitary gland and it is in the back of the gland, so it's not messing with my optic or my sinuses, which is a good thing, but in a way, a bit bitter sweet, since now instead of the surgery option being easy and through my nose, they will have to go in through my skull more than likely. We do not know my treatment methods yet, but it's more than likely going to be brain surgery.

So, at least that's a bit of good news before Xmas :)

Takala Enthusiast
Takala
Posted

"Bittersweet," yes - it always helps to finally get medical validation for the reason you're feeling bad, but not in the "never expected this" department. :(

gatita Enthusiast
gatita
Posted

I'm so glad glad part of the news is very good -- the 'it's not cancer, not messing with the optic' nerve part.

Now I will wish you the best on the treatment... I also have a friend who had brain surgery for a nonmalignant tumor (very large one) 20 years ago when she was 50 and she hasn't mssed a beat since, so I hope yours goes even better.

notme Experienced
notme
Posted

when brain surgery is the good news! man. you just never know what life is gonna throw at you.. you have a good positive attitude, sweetie, that will certainly help you through :) keep us posted and i will keep you in my prayers :)

  • 2 weeks later...
kristenloeh Community Regular
kristenloeh
Posted
  • Author

Since the tumor seems to be in the back of my pituitary, the neurologist can't do much since "technically" it's not IN my brain. So I talk to an endocrinologist about what other tests she wants me to do, to see if it's "active" or not, (messing with my hormones and/or secreting them), and then from there, we will hopefully start having a treatment plan in place. Been in and out of the ER from migraines and sever nausea over the holidays and these last few days. Trying to hang in there. Thanks to you all for the well wishes :)

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Do talk to your doctor and dietician about checking for nutritional deficiencies.  Most blood tests for the eight B vitamins do not reflect how much is available or stored inside cells.  Blood tests reflect how much is circulating in the blood stream, the transportation system.  Blood levels can be "normal" while a deficiency exists inside cells where the vitamins are actually used.  The best way to see if you're low in B vitamins is to take a B Complex, and additional Thiamine and look for improvement.   Most vitamin supplements contain Thiamine Mononitrate, which is not easily absorbed nor utilized by the body.  Only thirty percent of thiamine mononitrate listed on the label is absorbed, less is actually utilized.  This is because thiamine mononitrate is shelf stable, it won't breakdown sitting on a shelf in the grocery store.  It's so hard to breakdown, our bodies don't absorb it and can't turn it into a form the body can use.  Take Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) which the body can utilize much better.  (Ask for an Erythrocyte Transketolace Activity test for Thiamine level.  Though not accurate, this test does better picking up on a thiamine deficiency than a blood test.) Are you keeping your babies on a gluten free diet?  This can prevent genetically susceptible children from developing Celiac Disease.   P. S. Interesting Reading  Thiamine deficiency in pregnancy and lactation: implications and present perspectives https://pmc.ncbi.nlm.nih.gov/articles/PMC10158844/ Descriptive spectrum of thiamine deficiency in pregnancy: A potentially preventable condition https://pubmed.ncbi.nlm.nih.gov/37458305/ B vitamins and their combination could reduce migraine headaches: A randomized double-blind controlled trial https://pmc.ncbi.nlm.nih.gov/articles/PMC9860208/
    • trents
      Outgrow celiac?

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      @Riley, on this forum we sometimes get reports from people with similar experiences as you. That is, their celiac disease seems to go into remission. Typically, that doesn't last. At age 18 you are at your physical-biological peek in life where your body is stronger than it will ever be and it is able to fight well against many threats and abuses. As Wheatwacked pointed out, absence of symptoms is not always a reliable indicator that no damage is being done to the body. I was one of those "silent" celiacs with no symptoms, or at least very minor symptoms, whose body was being slowly damaged for many years before the damage became pronounced enough to warrant investigation, leading to a diagnosis. By that time I had suffered significant bone demineralization and now I suffer with back and neck problems. Please, if you choose to continue consuming gluten, which I do not recommend, at least get tested regularly so that you won't get caught in the silent celiac trap down the road like I did. You really do not outgrow celiac disease. It is baked into the genes. Once the genes get triggered, as far as we know, they are turned on for good. Social rejection is something most celiacs struggle with. Being compliant with the gluten free diet places restrictions on what we can eat and where we can eat. Our friends usually try to work with us at first but then it gets to be a drag and we begin to get left out. We often lose some friends in the process but we also find out who really are our true friends. I think the hardest hits come at those times when friends spontaneously say, "Hey, let's go get some burgers and fries" and you know you can't safely do that. One way to cope in these situations is to have some ready made gluten-free meals packed in the fridge that you can take with you on the spot and still join them but eat safely. Most "real" friends will get used to this and so will you. Perhaps this little video will be helpful to you.  
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