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Struggling To Get Better After Diagnosis.

Huxleberry

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Huxleberry Newbie
Huxleberry
Posted

Hi, I’ve been reading this forum looking for answers to my questions, so I figured there’s no harm in posting my situation. Worst case is nobody reads this, so here we go!

-25 year old female vegetarian. (dental student, 13 months from a D.D.S!)
-Diagnosis of Celiac in Nov 2013 after diet modification, blood tests and dermatologic differential diagnosis (digit clubbing, dermatitis herpetaformis)
-Since diagnosis,
---joint pain has subsided (except sciatica)
---DH is worse
---newly developed allergies
---lethargic
---bouts of shivering
--- anemic
---tinnitus
---light headedness.
---productive cough that doesn’t go away.

I have crappy student insurance so every specialist requires a referral from the unhelpful school clinic, so these visits have been slow. At the last visit, the dermatologist wouldn’t put me on the systemic med for DH until my protein levels are up. According to this latest test, my albumin levels and iron levels are low. (I was told this over the phone, I’ll be requesting a paper copy of my results at my next visit).  I have tried increasing my protein levels, but it’s a struggle.

Balancing all the monetary stress of these visits with my lethargy and pain ALONGSIDE trying to function as a student dentist at the school's dental clinic 8a-5p weekdays is proving to be more than I can handle. I don’t know what to push for with my doctors to get the most help most quickly so I can get the energy to deal with the rest. Any advice/encouragement is appreciated!

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kareng Grand Master
kareng
Posted

Look at the DH section. Are you eating very low iodine for the DH?

1desperateladysaved Proficient
1desperateladysaved
Posted

Are you able to get food not cross-contaminated?  Are you 100% gluten free?  Are you getting enough protein?  Do you also get enough vitamin B which is not very plentiful in plants?  Are you on a multivitamin, digestive enzymes, and probiotic?  Those are just questions for you to think about and discuss if desired..

Did you get your thyroid tested?  Celiac can cause thyroid trouble and feeling cold can be a symptom of that.

Was foggy mind or fatigue symptoms you had of celiac?  Maybe your light headed is that?  I felt dizzy from cross contamination issues.

 

I hope you will set aside that lethargy and have some energy.

 

Dee

NoGlutenCooties Contributor
NoGlutenCooties
Posted

Hi Huxleberry and Welcome to the Forum!

 

My first thought when I read your list of symptoms that you've had since diagnosis is that you are still getting gluten in your diet from somewhere.  Especially the shivers, light-headedness, and lethargy.  This sounds like what happens to me when I get glutened.  Re-check all of the labels on everything you eat, including any supplements.  If you eat anything not prepared by you in your own kitchen you could be getting cross-contaminated.  If you haven't completely cleaned the gluten out or if you share a kitchen with gluten eaters, you could still be getting cross-contaminated.  The most important first step is to make sure that you are 100% gluten free.

Aside from that, it is not uncommon for Celiacs to also become sensitive to other foods.  If you are sure that you are 100% gluten free you may want to try a food journal to see if you can pinpoint other foods that may be giving you problems.  Sensitivity to dairy and soy are common, for example.

nvsmom Community Regular
nvsmom
Posted

I agree that the thyroid could be something to check. TSH, free T3 and T4, TPO ab are good tests.

 

Some of those symptoms could be harmless or related to something else. I've been gluten-free for almost 2 years and my ears ring constantly; if it's quiet, I hear them. Light headedness has always been an issue for me too...You might as well look into possible causes, for what your budget will allow, as you might find an answer to the symptoms you listed.

 

That being said, it could all still be celiac related still. You've only been gluten-free for 5 months and that is not always long enough to feel better. I actually felt worse at 3-6 months, worse than when I was gluten-free at 2 months or one year. I still get the occasional symptom and backslide but I know that I am gluten-free. I just figure it's part of the recovery or it is some damage that just is not going to improve.  Maybe more time will be of benefit to you.

Huxleberry Newbie
Huxleberry
Posted
  • Author

Update from the friend that helped Huxleberry create this account and post on the forum: in a stunning twist, my beautiful, wonderful 25-year-old best friend is in the hospital. Her parents finally brought her from school to her hometown and put her in the hospital where doctors have found a large mass mid chest and lesions on her liver, spleen and lungs. Pet scan today revealed malignancies all over her body. I am still in shock, and don't know how to act. Thanks for the support, but it looks like neither of us will be on this site for a while. We've got bigger fish to fry.

kareng Grand Master
kareng
Posted

Update from the friend that helped Huxleberry create this account and post on the forum: in a stunning twist, my beautiful, wonderful 25-year-old best friend is in the hospital. Her parents finally brought her from school to her hometown and put her in the hospital where doctors have found a large mass mid chest and lesions on her liver, spleen and lungs. Pet scan today revealed malignancies all over her body. I am still in shock, and don't know how to act. Thanks for the support, but it looks like neither of us will be on this site for a while. We've got bigger fish to fry.

 

 

I am so sorry.  

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nvsmom Community Regular
nvsmom
Posted

:( Oh no.  Best wishes to her.

MGR Apprentice
MGR
Posted

I'll be thinking of you!!

  • 3 weeks later...
Huxleberry Newbie
Huxleberry
Posted
  • Author

Best friend here - diagnosis is stage 4b Hodgkin's Lymphoma. She'll be getting chemo for the next three months, but the tumors seem to be responding to treatment already, which is excellent news. The only reason I'm sharing this is because one of the professors at our school brought this to my attention: 

"Poor Celiac Disease Control May Up Lymphoma Risk"

Open Original Shared Link

 

"Lymphoma Risk Up in Celiac Disease"

Open Original Shared Link

 

Sort of blew my mind.

 

And thanks for the well wishes, I'll pass them on!

nvsmom Community Regular
nvsmom
Posted

Glad it is responding to treatment. Give her our best.

1desperateladysaved Proficient
1desperateladysaved
Posted

Thinking of all involved and hoping for the best.  Thanks for keeping us up on this.

 

Dee

CajunChic Explorer
CajunChic
Posted

Prayers to her and all involved! In the name of Jesus..

This was an eye opener as to the seriousness of this disease we're fighting.

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      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
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