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newly diagnosed questions

mandyinsd

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mandyinsd Rookie
mandyinsd
Posted

Hello

I am new to the group. I was diagnosed with Celiacs this week after undergoing a small intestine biopsy.  I am a 41 year old female, I been sick for years and believe this has gone undiagnosed with severe symptoms for over 12 years.  It wasn't until recently when I became severely anemic and needed iron infusions that I began to research on my own.  I asked the doctor to test me for Celiac and at first she declined so I lied and said my mother has it and so she moved forward.  I was wondering, I have been so sick for so long and have missed several days of work. Do any of you have experience with getting time off with FMLA or short term disability to begin the healing process?  I am completely overwhelmed with everything. I have severe vertigo, extreme fatigue, all the stomach issues you are all familiar with, the anemia, inflammation of my body, severe back pain. I could go on and on.  Also the gastro said they were going to refer me to a nutritionist but said nothing about coming in to discuss the diagnosis. Is that normal? I have kaiser insurance and live in San Diego.

Any suggestions on how to approach this with the doctors.

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mandyinsd Rookie
mandyinsd
Posted
  • Author

I would like to add that the gastro just called and they set me up with a 40 minute appt for friday. So hopefully I can go in prepared with questions. So any insight on what to ask and how to prepare would be greatly appreciated.

thanks in advance

Amanda

cyclinglady Grand Master
cyclinglady
Posted

Welcome, Amanda!

Kaiser is pretty good about follow-up care, if you ask for it.   Unlike a mammogram, they are not going to contact you.   Here are the tests and timing of care:

Open Original Shared Link

Basically, you can  talk to the GI about taking any time off.  It is dependent on your personal case.  Going gluten free is critical.  Check out our Newbie 101 thread pinned at the top of our "Coping" section.  It contains valuable tips.  My best advice is to stick to a diet rich in Whole Foods and avoid processed gluten-free Foods until you feel better.  Processed foods can have additives that may not agree with you until you have healed.  A temporary lactose intolerance is common with those with celiac disease.  I would avoid eating out for a while.  

There is an active support group in San Diego that I would encourage you to attend:

Open Original Shared Link

It took years to become so ill.  So, be patient.  We are here to help!  

Oh, be sure to take notes.  It might be helpful to have a friend attend with you.  When you are sick, it is hard to absorb everything!  Ask for copies of all lab results.  This will help you manage your care in the future.  

mandyinsd Rookie
mandyinsd
Posted
  • Author

Thank you so much. That is a great start!

Ennis-TX Grand Master
Ennis-TX
Posted

https://www.celiac.com/forums/topic/91878-newbie-info-101/

Huge help, I do suggest getting checked for deficiencies, a lot of us end up with issues absorbing nutrients from our foods due to our damaged intestines, common issues are Magnesium, Iron, B-vitamins, Niacin, Folic Acid, Vitamin E and D along and sometimes others. I really do suggest trying to supplement the Magnesium, B-Vitamins, and Niacin if you have fatigue, they seems to help most of us.  We are all different and develop different issues,  We are also prone to food intolerance and random allergies. We suggest a whole foods only diet with very little to no processed foods starting off, you should see about working with a dietician on a food plan. We also suggest dropped dairy for awhile when you start healing, many of us have issues with it til we start healing and you can add it back in later if it does not bother you. I will provide some links to some gluten-free food options for future, brands, and places to get various products and how to order them at your local stores or online. These should simplify things and take a lot of the overwhelming part out of it, just think of it as changing brands to stuff that is gluten-free certified over what you used to eat if you have to. https://www.celiac.com/forums/topic/117090-gluten-free-food-alternatives-list/

After talking with your doctors I can show you what I use for various supplements, and others are likely to help you to find things also to help with various issues. This forum is like a really close knit family, very supportive and full of others who know the hardship of dealing with various issues associated with this disease and will help you along the way on your trip to recovery.

 

mandyinsd Rookie
mandyinsd
Posted
  • Author

Thank you Ennis

Its so overwhelming. I just don't know where to begin. I appreciate all the feedback. I see the doctor on Friday morning so I will be back her to bounce things off you all then.

 

icelandgirl Proficient
icelandgirl
Posted

Hi Mandy and welcome to the board!

You have done great so far in advocating for yourself and that will serve you well in your recovery.  It will take time.  You've been sick for years, getting worse and worse.  Now you have to be patient with healing.  

Like the others have said, eating a diet rich in whole foods is such a great way to go.  That way you get a lot of nutrition in.  As another wise member once told me...think of food as your medicine.  By taking out the food that is hurting you and eating really nutritious things you will allow your body to heal.  Avoid eating out for the first few months.  Definitely read the newbie 101 thread...it is so helpful.

I'm a stay at home mom now, but had to take FMLA for another issue years ago and basically my doctor at the time had to fill out some paperwork as to why I couldn't work.  Then when I returned to work it was half time to begin with and gradually increased.  If you explain what is going on to your gastro doc, she would be able to take care of that.  Severe vertigo alone makes it difficult to function so it sounds like a leave may be what you need.

Do ask to be tested for nutrional deficiencies as Ennis mentioned.  A lot of celiacs do have some.  You're already anemic so it wouldn't be a surprise if there were other deficiencies as well.  Vitamin D and B12 are pretty common ones.  At diagnosis my Vitamin D was quite low, but is now quite a bit better. 

Please do keep asking questions and let us know how your appointment goes!

 

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Jmg Mentor
Jmg
Posted

Hi Amanda and another welcome :)

You've found a great site, there's lots of shared experiences and support to access here. 

 

13 hours ago, mandyinsd said:

would like to add that the gastro just called and they set me up with a 40 minute appt for friday. So hopefully I can go in prepared with questions. So any insight on what to ask and how to prepare would be greatly appreciated.

You could ask about the level of damage detected in the biopsy, levels of markers in your bloods tests and what if any monitoring they propose to check how well you do on the gluten free diet? 

Also good points above about detecting any nutrient deficiencies so you can plan your diet appropriately.

I know this must be overwhelming but hopefully you will come to see this time as a very positive event, because you can now begin to heal and find out just how well your body responds. I got so many unexpected improvements once I eliminated gluten, the back pain was one of them, I never thought for one minute it was diet related. Funnily enough I first experienced it when living off La Jolla village boulevard in your lovely home town, but sadly it took me way too long to identify the cause.  

Best of luck with your appointment and your onward journey into gluten free good health. 

Matt

 

mandyinsd Rookie
mandyinsd
Posted
  • Author

Thank You Matt!

Sara789 Contributor
Sara789
Posted

Hi Mandy,

Welcome and I'm sorry you're having such a hard time of it. 

I felt completely dumped/abandoned/etc by the health care professionals I went to for help. This forum has been so helpful. It's still hard, but the people here share their experiences and knowledge to help others.

Keep advocating for yourself and learn as much as possible. I've been at it for 2 months and having lots of ups and downs.

The Celiac Disease Foundation has unemployment benefits information if that's something that would be best for you: Open Original Shared Link. Like with medical issues, I've found it best to be armed with information when speaking with HR since a lot of times they don't know what employee rights and privileges are actually available. Each employer's HR department does things a little differently, so I'd read up on what yours requires and start the process if you need to.

Good luck!

mandyinsd Rookie
mandyinsd
Posted
  • Author
On 2/28/2017 at 10:20 AM, Sara789 said:

Hi Mandy,

Welcome and I'm sorry you're having such a hard time of it. 

I felt completely dumped/abandoned/etc by the health care professionals I went to for help. This forum has been so helpful. It's still hard, but the people here share their experiences and knowledge to help others.

Keep advocating for yourself and learn as much as possible. I've been at it for 2 months and having lots of ups and downs.

The Celiac Disease Foundation has unemployment benefits information if that's something that would be best for you: Open Original Shared Link. Like with medical issues, I've found it best to be armed with information when speaking with HR since a lot of times they don't know what employee rights and privileges are actually available. Each employer's HR department does things a little differently, so I'd read up on what yours requires and start the process if you need to.

Good luck!

Thank you so much. I've had follow up tests but have been given the run around with who to follow up with regarding the follow up. Ugh!

my iron is really low, so is my potassium and vitamin D

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      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
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