• Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

How To Notify Family
0

Rate this topic

49 posts in this topic

Recommended Posts

I just realized I do have genetic risk, so I emailed my parents and brother. I told them the full list of blood tests to request and told them the risk was low but since the potential for serious consequences from leaving it untreated is serious that I hoped they would get tested.

My dad wrote me back saying no way but thanks for the info. This was no surprise as he is a full time missionary in the slums of Jamaica and he does not have medical care or believe in it at all, and sees special diets as an act of privilege when people are starving, in addition to an act showing lack of faith. Ironically he used to be a pharmaceutical rep specializing in GI medications, so he is pretty informed about a lot of this stuff.

I haven't heard back yet from my mom or brother. My mom can't even imagine a meal without bread but I do think she'll get tested just to humor me. I kind of doubt my brother will do it because it's just one more thing to get around to.

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


I took the time to write a letter to my large family. They ALL know I was very, very ill and incapacitated from something for over 3 years, so when I was Dxed, and had the genetic test done which showed genes from both parents, I felt it was the right thing to inform all of them. I have siblings and over 40 cousins and they all have kids, too.

I explained gluten sensitivity, intolerance and Celiac. I sent a list of over 300 symptoms and autoimmune conditions that are associated with it. I told them what they could do to feel better, what tests to have done, and WROTE UP a shopping list and created a month's worth of menu suggestions.

I did that because one said to me "It's too hard and expensive to do with a family". Baloney!

I provided links to various sites for information, articles on their specific conditions and how they relate to gluten intolerance and offered to help anyone who needs guidance. I even PHOTOCOPIED all this and mailed it to people who do not have email!

If someone had done all that for me years ago and TOLD ME I WOULD FEEL BETTER if I just did this one thing, I'd have jumped for joy. :huh:

Here is the reply I got from over 50+ people I informed:

:unsure:

One cousin told my Mom he cried when he read about what happened to me. One told her he knows this is probably what he has because he has all the symptoms. One with Crohn's said that my story sounded like hers.But NONE have done a thing about it.

My family--both sides --is LOADED with autoimmune diseases (diabetes, thyroid disease, various cancers, Crohn's, MS, asthma--- and almost every one of them has GERD or "irritable bowel" or is overweight (as I once was) and there is some anxiety/depression there as well.Practically NO ONE has a gall bladder anymore (me neither) and some have unexplained anemia.

My Mom, after reading all the info I sent (and helplessly watching my decline for 3 years) was the only who took it seriously.

Learning the ropes and how to" punt" in a gluten- filled world is a bit rough, but if my 84-year-old Mom can do it, anyone can. She goes to weight watchers for her weekly meeting ( she is on maintenance for life) and tells others about gluten sensitivity and celiac and how wheat could be affecting their health. Go Mom! Her lifelong anxiety, stomach and bowel issues, insomnia and GERD are gone. She sees how it affected her whole life now--as it has mine.

When asked if it is difficult to adopt a gluten-free diet, she says "No, what's the big damn deal? "... :lol: :lol:

Whomever uses the excuse "it's too late to change"--- hasn't met my Mom--and is doing just that: "making an excuse".

The saddest part of all is my sister, whom I love dearly, will not get tested. She has diabetes, hypothyroidism, high blood pressure and various other issues. I worry that she will develop even MORE symptoms, like kidney disease. We now realize this thing likely killed my Dad. :(

Her final word on this whole subject was "Thanks, but I trust my doctor and will go with the medications and protocols in place."

Now, guys, she TOLD this doctor (and he is also my MOM's doctor) that I was ill for 3 years and DXed with celiac and that I said she should have the test. Now, either he is too ignorant to do it or she simply has refused because she does not want to follow the diet on top of caring for her diabetes.

In any case, it is a damn shame that no one listens to us. I am tired of banging my head against the wall trying to get them to see what's right in front of them. One even told me "well, no one is as sick as you are, so we don't think it's a problem" :o .....and I thought to myself....OK, but someday, you will be and I will be here to help.

Tell them, then, let it go. I lost enough sleep over it.

Best wishes!

Share this post


Link to post
Share on other sites

I took the time to write a letter to my large family. They ALL know I was very, very ill and incapacitated from something for over 3 years, so when I was Dxed, and had the genetic test done which showed genes from both parents, I felt it was the right thing to inform all of them. I have siblings and over 40 cousins and they all have kids, too.

I explained gluten sensitivity, intolerance and Celiac. I sent a list of over 300 symptoms and autoimmune conditions that are associated with it. I told them what they could do to feel better, what tests to have done, and WROTE UP a shopping list and created a month's worth of menu suggestions.

I did that because one said to me "It's too hard and expensive to do with a family". Baloney!

I provided links to various sites for information, articles on their specific conditions and how they relate to gluten intolerance and offered to help anyone who needs guidance. I even PHOTOCOPIED all this and mailed it to people who do not have email!

If someone had done all that for me years ago and TOLD ME I WOULD FEEL BETTER if I just did this one thing, I'd have jumped for joy. :huh:

Here is the reply I got from over 50+ people I informed:

:unsure:

One cousin told my Mom he cried when he read about what happened to me. One told her he knows this is probably what he has because he has all the symptoms. One with Crohn's said that my story sounded like hers.But NONE have done a thing about it.

My family--both sides --is LOADED with autoimmune diseases (diabetes, thyroid disease, various cancers, Crohn's, MS, asthma--- and almost every one of them has GERD or "irritable bowel" or is overweight (as I once was) and there is some anxiety/depression there as well.Practically NO ONE has a gall bladder anymore (me neither) and some have unexplained anemia.

My Mom, after reading all the info I sent (and helplessly watching my decline for 3 years) was the only who took it seriously.

Learning the ropes and how to" punt" in a gluten- filled world is a bit rough, but if my 84-year-old Mom can do it, anyone can. She goes to weight watchers for her weekly meeting ( she is on maintenance for life) and tells others about gluten sensitivity and celiac and how wheat could be affecting their health. Go Mom! Her lifelong anxiety, stomach and bowel issues, insomnia and GERD are gone. She sees how it affected her whole life now--as it has mine.

When asked if it is difficult to adopt a gluten-free diet, she says "No, what's the big damn deal? "... :lol: :lol:

Whomever uses the excuse "it's too late to change"--- hasn't met my Mom--and is doing just that: "making an excuse".

The saddest part of all is my sister, whom I love dearly, will not get tested. She has diabetes, hypothyroidism, high blood pressure and various other issues. Her final word on this whole subject was "Thanks, but I trust my doctor and will go with the medications and protocols in place."

Now, guys, she TOLD this doctor (and he is also my MOM's doctor) that I was ill for 3 years and DXed with celiac and that I said she should have the test. Now, either he is too ignorant to do it or she simply has refused because she does not want to follow the diet.

In any case, it is a damn shame that no one listens to us. I am tired of banging my head against the wall trying to get them to see what's right in front of them. One even told me "well, no one is as sick as you are, so we don't think it's a problem" :o .....and I thought to myself....OK, but someday, you will be and I will be here to help.

Tell them, then, let it go. I lost enough sleep over it.

Best wishes!

When my brother was here, we talked about the disease. I reminded him that all off Mom's 8 brothers and sisters were ambulatory at a very late age, and the survivors are still totally ambulatory without walk aids. Yet Mom was wheelchair bound. He said "So you have to choose between gluten or walking? That seems like an easy choice."

It's really frustrating about your sister.

I have a co-worker who I'm pretty sure needs to go gluten-free, but she's adamant that she won't get tested and would rather die than give up bread. (One of the dead bread heads.) I've mentioned it twice in two years, won't bring it up again. The other day she saw me photocopying a recipe from a cookbook and asked if I had a good recipe. I told her she wouldn't be interested b/c it was gluten-free. Her response was "That's right!"

I've shared other gluten-free recipes with her that she's loved, but if you tell her it's gluten-free she's not interested. LOL.

Share this post


Link to post
Share on other sites

When my brother was here, we talked about the disease. I reminded him that all off Mom's 8 brothers and sisters were ambulatory at a very late age, and the survivors are still totally ambulatory without walk aids. Yet Mom was wheelchair bound. He said "So you have to choose between gluten or walking? That seems like an easy choice."

It's really frustrating about your sister.

I have a co-worker who I'm pretty sure needs to go gluten-free, but she's adamant that she won't get tested and would rather die than give up bread. (One of the dead bread heads.) I've mentioned it twice in two years, won't bring it up again. The other day she saw me photocopying a recipe from a cookbook and asked if I had a good recipe. I told her she wouldn't be interested b/c it was gluten-free. Her response was "That's right!"

I've shared other gluten-free recipes with her that she's loved, but if you tell her it's gluten-free she's not interested. LOL.

Dead Bread Heads. LOVE it!!

Share this post


Link to post
Share on other sites

Dead Bread Heads. LOVE it!!

I like that one! :lol:

I usually say "Gluten Head" to describe the brain stuff I have from gluten :blink:

and I use GEs or WEs---Gluten Eaters/Wheat Eaters for "them"... :lol:

Share this post


Link to post
Share on other sites
Learning the ropes and how to" punt" in a gluten- filled world is a bit rough, but if my 84-year-old Mom can do it, anyone can. She goes to weight watchers for her weekly meeting ( she is on maintenance for life) and tells others about gluten sensitivity and celiac and how wheat could be affecting their health. Go Mom! Her lifelong anxiety, stomach and bowel issues, insomnia and GERD are gone. She sees how it affected her whole life now--as it has mine.

IrishHeart, your mom totally rocks!

Share this post


Link to post
Share on other sites

IrishHeart, your mom totally rocks!

Hey Celtic Queen! (I feel like we are kindred souls)

Thanks yes, she is quite the character. :lol:

She is very upset that my family has ignored all the info I sent.

She does not understand why they would not do whatever they could to feel well.

Me neither. :rolleyes:

Share this post


Link to post
Share on other sites

Hey, I could use another kindred soul. Most days I need all the help I can get :D

Well, you're in the right place!

Last year at this time, I was thinking death would be easier; I was unable to think straight, in searing pain, exhausted and sick as a dog every single day for 3 whole years, yet I knew in my heart I COULD get well if I just figured it out.

Now, one LONG year later....next week, I am cooking Thanksgiving dinner for my family again and grateful that my husband and I never gave up hope.

Hang in there, kiddo :)

Share this post


Link to post
Share on other sites

I'm just a wheat-allergy person who is gluten-intolerant, but hoestly? The thing that makes most people realize this might be something in the family health history rather than something in my own mind? "I haven't been this.... er... 'regular' in years." No one wants to bring it up to a discussion that they deal with chronic D, but as soon as there is something like a specific food that it can be pinned on, people start to listen.

Share this post


Link to post
Share on other sites

When I got my diagnosis I called all family members personally. I told them that a hereditary disease was found with me and that they should be tested as well because the disease doesn't always manifest itself through GI symptoms. That got their attention. Then I went to explain what celiac disease was and how they might be affected. However, most of them didn't understand the part about the symptoms. They just said: well, I don't have GI problems so I don't have celiac disease <_< An aunt didn't want to get tested because she literally said: "What if the test comes back positive? Then I'm in trouble!". Great strategy, darling... Two female family members had a lot of GI problems and vitamin deficiencies and got a blood test. When it came back negative they didn't want a biopsy. Grrr... I've seen a research paper from Spain lately which is about blood testing in adults, they found out that the test is only conclusive for 33% of adult coeliacs. I've stopped bothering about it then, they know what to test for if their symptoms get worse.

Share this post


Link to post
Share on other sites

I started to get "celiac is a serious wasting disease in children" lecture last week..

I'll let you guys comment on that one :angry:

((We use "guys" as a non-gender specific term in Australia so anyone is welcome to comment ;) ))

Share this post


Link to post
Share on other sites

I started to get "celiac is a serious wasting disease in children" lecture last week..

I'll let you guys comment on that one :angry:

((We use "guys" as a non-gender specific term in Australia so anyone is welcome to comment ;) ))

Using "Guys" for everyone---is the same in the US ;)

Was that comment from a doctor? Because if it came from a non-medical professional, it's understandable. Celiac disease is woefully misunderstood--even in the medical community.

That archaic thinking "children's disease" (or worse, something a child can "outgrow") is what left millions of people world-wide undiagnosed for years. The ripple effect is mind- boggling. How many people died--or are in mental health wards or wheelchairs or battling cancer--because of gluten? Time for these idiots to pick up a medical journal from THIS century once and a while and read what WE ALREADY KNOW. Why did I have to diagnose myself and bring it back to my PC doctor--whose OWN children have celiac--- to hear him say "I did not realize how it manifested in adults"...what Bull---t.

oh, don't get me started on the medical profession. :rolleyes::lol:

Share this post


Link to post
Share on other sites

some doctors don't get it, the head of the GI clinic at our children's hospital silt the firm belief that if a child is not malnourished, and has no evidence of anything in the bloodwork than absolutely nothing is wrong, but our regular GI and our pediatrician don't care what blood says, they look at the physical evidence. We have been told we can't get an official diagnosis of glutenintolerance as there's of the GI clinic downs't believe it exists.

Share this post


Link to post
Share on other sites

We have been told we can't get an official diagnosis of glutenintolerance as there's of the GI clinic downs't believe it exists.

But do they believe that the moon is made of blue cheese? :lol:

Share this post


Link to post
Share on other sites

some doctors don't get it, the head of the GI clinic at our children's hospital silt the firm belief that if a child is not malnourished, and has no evidence of anything in the bloodwork than absolutely nothing is wrong, but our regular GI and our pediatrician don't care what blood says, they look at the physical evidence. We have been told we can't get an official diagnosis of glutenintolerance as there's of the GI clinic downs't believe it exists.

Here is an article you can print off and bring to the doctor. Would they believe one of the foremost authorities on gluten and Celiac Disease research?

http://somvweb.som.umaryland.edu/absolutenm/templates/?a=1474

Share this post


Link to post
Share on other sites

some doctors don't get it, the head of the GI clinic at our children's hospital silt the firm belief that if a child is not malnourished, and has no evidence of anything in the bloodwork than absolutely nothing is wrong, but our regular GI and our pediatrician don't care what blood says, they look at the physical evidence. We have been told we can't get an official diagnosis of glutenintolerance as there's of the GI clinic downs't believe it exists.

Hmmm in nursing school we were taught to nurse the patient, not the numbers,...

Share this post


Link to post
Share on other sites

Hmmm in nursing school we were taught to nurse the patient, not the numbers,...

This is why nurses are more empathetic and compassionate than most doctors and believe that the patient's level of pain is what he/she says it is. :)

( P.S. I have 4 close friends who are nurses and they are as frustrated with doctors as I am.... :rolleyes:<_< )

Share this post


Link to post
Share on other sites
Hmmm in nursing school we were taught to nurse the patient, not the numbers,...

And that is why I like nurses so much better than doctors. For them it's more about making their patients feel better than the size of their ego or how much money they make.

Share this post


Link to post
Share on other sites

And that is why I like nurses so much better than doctors. For them it's more about making their patients feel better than the size of their ego or how much money they make.

I've had the best luck with Nurse Practictioners. There was one at our peds office who I loved dearly. She was so down to earth and very open to suggestions. She left and I was tempted to follow her to her new office, but it wasn't feasable for me to do so. Luckily my peds office hired a new NP and she is great too. We also see a NP at our allergy office. He has been wonderful. He is pretty much the feeling that if it makes you sick or hurt you dont eat it and avoid it. He is the one that really encouraged me to put my oldest son gluten free. For being an older gentleman he is very up to date on his information and very open minded.

Share this post


Link to post
Share on other sites

Soooo....

I'm almost at the 1 year mark.

I haven't really notified family.... I kind of went through an angry phase??? I sort of hated everyone around Christmas...happened again at Easter (and Easter is my favorite holiday). Anyway... I'm working on it.

Soooooooo.....

I finally feel like I'm at a place where I can write my story, contact people, discuss this with a clear voice.

Sooooooooooooooo.....

I started writing my story. I plan on sending a letter with a web address where I put all the info I've gathered (I'm organizing my info anyway before I lose it).

That's where I'm at. I'm writing it and providing references and........and all I can say is that it's eerie. As I list event after event, dx after dx it starts to become so obvious. So frickin' obvious I have AI issues. And if you connect the dots... Celiac makes perfect sense.

Anyway............

I'm going to keep writing and gathering and organizing. This is my therapy.

And I'm still boycotting holidays. Sort of. That's another post.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      108,140
    • Total Posts
      939,876
  • Member Statistics

    • Total Members
      66,129
    • Most Online
      3,093

    Newest Member
    Serah
    Joined
  • Popular Now

  • Topics

  • Posts

    • Positive biopsy and blood work?  It sure sounds like your doctor made the right diagnosis.   Let me tell you my story.  Diagnosed after going for a routine colonoscopy because I am over 50.  GI saw my chart and noted that I was anemic.  I have a genetic anemia and I was iron deficient as well.  I lived like that my entire life.  But my wise GI ordered a celiac blood panel and it was considered mildly positive.  So, he ordered an endoscopy to my colonoscopy.   I had been dairy free since I was young.  Was told that I had an allergy.  I had not any GI issues with gluten.   I was an avid baker.  I had nut issues and also mushroom, garlic/onion, and egg intolerances.  I had some pretty severe allergies to medications (anaphylactic) and some seasonal allergies along cats and horses.   I was shocked.  My husband had been gluten free for 12 years prior to my diagnosis.  There is no way both of us would have gluten issues.  But...the tests did not lie.  My iron deficiency anemia resolved within months of my going gluten free.  Two months into the diagnosis, I fractured my back doing NOTHING!  I have osteoporosis as a results of having celiac disease.   Grief is completely understandable.  Denial is a part of grieving.  But the proof will be in follow-up blood tests and how you feel.   So, now I can eat nuts (not almonds), eggs (two a day every single)  and dairy.  Yes, ice cream!  I have yet to get back garlic and mushrooms, but I can live with that.   I have Hashimoto’s too.  .  Once you have one autoimmune disorder, you can develop more.  The gluten-free diet may help, not only your celiac disease, but your UC issues as well.   Try the diet.  I think you will be pleasantly surprised!  
    • Hi Sofie! Listen to KarenG.   We both had iron deficiency anemia when we were diagnosed.  Plus, I have Thalassemia which is a genetic anemia on top of the iron deficiency anemia.   Dumping iron into your system is not the solution.  You need to be seriously gluten free.  You are probably unknowingly damaging other parts of your body....like your bones.  Two months after my diagnosis, I fractured my back doing NOTHING!  Think you are just not getting enough oxygen to your brain?  Think again!  It is probably related to celiac disease.  Celiac disease is systemic.  It is not just about villi damage.   But why am I telling a college student this?   You should be researching your autoimmune illness and ensuring that you do not develop Cancer (rare) or another autoimmune disorder like lupus, diabetes, thyroiditis, MS, Crohn’s, or one of the almost 100 other Autoimmune disorders (common).    Get your antibodies down.  Your mild anemia is the least of your problems.  Raising  your ferritin level may help a little, but healing from celiac disease will help you a lot more!    
    • Let my start by giving a brief summary of what I’ve been diagnosed with. Just over the past year I’ve been diagnosed with Celiac, EOE, lactose intolerance, soy allergy, tree nut allergy. Most recently diagnosed with Ulcerative Colitis. The Colitis came 8 months after having found out I had celiac. I have never had problems with gluten in my life. Dairy was something I had to eliminate because of the excrutiating stomach pains I would get from it. But I can have gluten any day and not have a problem.  I was diagnosed with a biopsy and followed by bloodwork. But who’s to say that dairy wasn’t the cause? I just feel like the GI was very quick to jump on the diagnoses without fully understanding my medical history, prescriptions I’ve took in the past ie long term antibiotic use, accutance, and 7 years of constant NSAID use.
    • I think she wants you to be strictly gluten free and heal.  Not give you things to patch up the damage you are causing by not getting your antibodies down and healing.   I am sure  she expected that you would take your diagnosis seriously and eat gluten-free.  4 months after your diagnosis, your antibodies would have gone down better.  But you weren't eating gluten free.  Eat gluten free. Take your supplements.  Read about the correct way to get your iron up - B12, vitamin C, don't take with calcium foods, etc  
    • Hello! I'm hoping to get some advice from y'all about iron IV infusions. First, some background: I was diagnosed with celiac disease at the beginning of June this year (2017).  I had labs done in March and my serum ferritin was 5 ng/mL. Hgb was 11.1, which isn't all that low, but is still flagged as below the normal range. I took 325 mg ferrous gluconate supplements daily for two months, and when my ferritin was rechecked, it was down to 4. The doctor ordered a celiac antibody panel and all of the levels were high. Confirmed with endoscopy at the end of May. A month later, I left for a 2-month study abroad program in France (aka the land of bread and pastries). After returning to the US at the beginning of August, I finally went gluten-free.  At the beginning of September, I returned to my University. Almost immediately, I realized I was really tired and was having a hard time making it through the day without a nap. I finally had a follow-up GI appointment around September 20th with the PA of the doctor who performed my endoscopy (not the same doctor from March). During the appointment, I asked her what we would do if my labs showed an iron-defiency. She told me that we would either do oral supplements or IV infusions, depending on whether or not she thought I'd absorb the supplements. When the lab results came in on the online patient portal, she made no comment on any of the iron-related results, just sent me a message that my antibody levels were still quite high, that I needed to keep up a strict gluten-free diet, and that we would recheck everything in six months. My ferritin was down to 3, Hgb was 10.3, iron saturation 6%, etc.  I was concerned about those results, so I called the PA's nurse and left a voicemail asking what the plan was for getting those levels up and got a portal message back from the PA saying that my hemoglobin was slightly low and will get better over time as I cut out all the gluten in my diet, but that I can start taking supplements if I want to speed up the process. I know that the Hgb still isn't that low, but it seems like the ferritin level is more serious. I went back for an appointment with the doctor who first found the iron-deficiency back in the spring and she seemed a lot more concerned. When I brought up IV iron therapy, she seemed to think it was a good idea. However, she's a primary care physician through my school's clinic, so she can't give me infusions. She called the PA with the intention of finding out whether or not she would change her mind about infusions, and had no luck. Interestingly, the PA's nurse informed her that they don't expect me to be able to absorb the supplements right away, and would consider IV infusions after I've been gluten-free for another six months.  I've done a bit of research on the IV infusions and it seems like I fit the criteria. Based on my antibody levels, I'm clearly not able to absorb iron any better than back in the spring, when the oral supplements did nothing for me. I understand that once my intestines heal more, I'll start being able to absorb iron better and should be able to boost my levels with oral supplements. However, I feel like I need a solution that will help me much sooner. I have a very demanding course load this semester and I'm constantly exhausted. I fall asleep doing homework at least twice a week. My grades are suffering, my mental health is suffering, and my relationships are being tested. I still don't have an explanation for why the PA doesn't think IV infusions are appropriate and I don't understand it. I really don't know what to do next because I'm afraid if I try to talk to the PA again, she'll get annoyed. I know that was super long, so for anyone still reading, thank you for bearing with me!! Now for the questions: 1. Do you think iron IV infusions in the near future would be a reasonable treatment for me? 2. Do you have any advice on how to make them happen? And if you have any other advice that's relevant to my situation, I'd love to hear it!   Thanks so much, Sofie
  • Upcoming Events