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Feeling Down

tryme

By tryme
in Coping with Celiac Disease

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tryme Rookie
tryme
Posted

I just want to rant to feel a bit better. I started my gluten free diet in Oct 2013 after my diagnosis and with a motivation to have a child. I worked super hard on not eating gluten and was asked to do blood test to check antibody level by end of nov. The level came back as > 200 which is what it showed before I started my diet. I am aware that it can take long for the antibody levels to come down. I have been sticking to the diet as much as humanly possible but I still feel down that at least the level should have came down just a little bit. Makes me feel that I really worked very hard but still there were no positive results.

 

Also now I am dealing with hyperparathyroidism (benign tumour on one of my parathyroid glands) and the doctors simply told me not to get pregnant and wait for my appointment with the surgeon. So I have no idea when the surgery will be. From what it seems doctors are not taking me as a high risk patient. For them I am just another case for which they don't care to be proactive and correct the problem before any complications such as arthritis or other severe conditions develop. Also If I was to get pregnant they will have to definitely operate me during my pregnancy as high calcium levels and low vit D can be dangerous for the baby but so will be the general anaesthesia from the surgery.

 

I was originally going to wait until my celiac is under control and my blood antibody level come down to normal range but now I feel that there is another wait for surgery and my plans to start a family will be delayed even more. The symptoms (mainly low energy and mood) are similar for both celiac and HYPERTH which makes it difficult for me to know if I am making any slips with my gluten free diet. I am not very sensitive to gluten which makes it even harder to detect any gluten consumption. After my last blood test, I am scared to even go for another test thinking if 3 months will be too little time for the antibody levels to comedown. I guess I just don't want to get disappointed again with the results and feel like all my hard work was in vain.

 

I am sorry about me making a big deal out of my little things while there are people out there in much worse condition. Its just hard knowing that if the doctors keep ignoring my condition, I will end up getting more complications .

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GF Lover Rising Star
GF Lover
Posted

Hi Tryme,

 

When it comes to our Health, it IS a big deal.  I would suggest that you go thru all of your gluten free practices.  Your kitchen etc.  Make sure your supplements are all gluten-free.  Don't eat out side of the home for the time being.  Basically check EVERYTHING down to your lip balm.  Look thru the Newbie 101 thread as a refresher or for the first time.  There are other threads also that go thru Kitchen problems in more detail, do a search on the Forum.  

 

The thyroid is something you have to have stabilized before you consider starting your family.  Look at the big picture, another six months or so is very doable.  When you schedule your surgery, stress that you need this sooner rather than later, also let the Surgeons Office know that you are able to come in if they get a cancellation, if you can do that.  And lastly, be patient.  Your health is too important to rush and not be completely ready to start your family.  Being pregnant is very stressful on the body and then when the little bugger is born, the real stress starts and you really don't want to be dealing with health issues then.

 

Let us know how things progress for you and ALWAYS vent when you need to.  This site is for support!!!

 

Colleen

Adalaide Mentor
Adalaide
Posted

Testing you after a month was sort of, well... stupid. There was no point in it since you would barely have started the gluten-free diet, and I think all of us who are more than a year in look back at ourselves in our first months and are like "omg I was doing WHAT?!" So first, just calm down about it. Stress surely isn't going to help you at this point. And remember, you're lucky to even get the diagnosis, as many here were unable to ever conceive or carry to term due to being undiagnosed until it was too late. So there is much hope for you, you simply need patience.

 

Review the newbie thread, make sure you aren't missing anything that could be causing you issues. If not, then simply wait for your next check on your levels. And don't be upset if they aren't down a lot, healing takes time and it may take months before you start to see positive improvement there.

 

Don't be afraid to be proactive about getting the appointments you need to get. I don't understand if you have a first appointment with a surgeon and you just don't feel like it is soon enough or you can't get an appointment for some reason. As long as your doctor made the referral in your notes, you should be able to call and make and appointment yourself and just ask to have your records sent over if they're not in the same network where they can just see them on their system.

Gemini Experienced
Gemini
Posted

I just want to rant to feel a bit better. I started my gluten free diet in Oct 2013 after my diagnosis and with a motivation to have a child. I worked super hard on not eating gluten and was asked to do blood test to check antibody level by end of nov. The level came back as > 200 which is what it showed before I started my diet. I am aware that it can take long for the antibody levels to come down. I have been sticking to the diet as much as humanly possible but I still feel down that at least the level should have came down just a little bit. Makes me feel that I really worked very hard but still there were no positive results.

 

Also now I am dealing with hyperparathyroidism (benign tumour on one of my parathyroid glands) and the doctors simply told me not to get pregnant and wait for my appointment with the surgeon. So I have no idea when the surgery will be. From what it seems doctors are not taking me as a high risk patient. For them I am just another case for which they don't care to be proactive and correct the problem before any complications such as arthritis or other severe conditions develop. Also If I was to get pregnant they will have to definitely operate me during my pregnancy as high calcium levels and low vit D can be dangerous for the baby but so will be the general anaesthesia from the surgery.

 

I was originally going to wait until my celiac is under control and my blood antibody level come down to normal range but now I feel that there is another wait for surgery and my plans to start a family will be delayed even more. The symptoms (mainly low energy and mood) are similar for both celiac and HYPERTH which makes it difficult for me to know if I am making any slips with my gluten free diet. I am not very sensitive to gluten which makes it even harder to detect any gluten consumption. After my last blood test, I am scared to even go for another test thinking if 3 months will be too little time for the antibody levels to comedown. I guess I just don't want to get disappointed again with the results and feel like all my hard work was in vain.

 

I am sorry about me making a big deal out of my little things while there are people out there in much worse condition. Its just hard knowing that if the doctors keep ignoring my condition, I will end up getting more complications .

tryme......your antibody levels may have come down, after all.  I hate that they don't give people a definitive number on the tTg because >200 could mean your antibodies where 500....you don't know.  You only know that it was greater than 200.  If they were 500 and came down to 300, then it would still register at >200....see what I mean?  That was how my testing came back.  The scale only went to 100 and the graph on the test results had the line shooting way out past the 100 mark.  What the hell is that?  :angry:   I did not re-test my blood work until the 1 year mark and it was normal.....low normal, to boot.  Patience is the name of the game with celiac.

 

Considering that you have a parathyroid problem, plus recovery from Celiac in the picture, you may have to wait a year to become pregnant.  I know this is probably terribly disappointing to you but in the large scheme of things, that year will go by fast as you will be busy regaining your health.  You do not want to be taking care of a small baby when you aren't feeling good, do you?  Be patient, work on your health and don't worry.  Your numbers will normalize, your surgery will fix the parathyroid issue and then you can concentrate on being a parent!  You also want to have a healthy baby.

 

Much luck to you on all fronts!    :)

tryme Rookie
tryme
Posted
  • Author

Thank you gluten-free Lover, Adalaide and Gemini. 

 

Back when I started the diet, I printed out the newbie thread and posted in on the inside of my pantry. My husband is the only other member in my family and he has gone gluten-free with me. He is actually even more careful of reading ingredients and not bringing in any kind of gluten in the house. We clean out kitchen/Pantry down to scratch every month and I have not eaten outside food since end of October. My skincare products are all gluten free. No spices allowed in the house unless product manufacturer confirms its gluten free. :(  But I definitely had few setbacks in my diet (ate nuts that were processed in equipment that processed wheat).

 

I am waiting to see my surgeon in Feb (I have been waiting since end October). This happened after I made numerous phone calls to my Endocrinologist's office. Hopefully the surgeon doesn't give me a date year down the road.

 

 Gemini- Thanks for explaining the whole >200. I guess I was so focused on the negative that I did't look at it in a more positive perspective. I don't know why my GI thought I should go for blood test earlier. The one I did a month after starting my diet was suggested by some internal medicine doctor who wanted to prove his point  of  " Don't be so paranoid.All you need to do for celiac is not eat bread. Come back in a month and I guarantee you will be fine. And as for your parathyroid - drink lots of water and you will be good to go." I did the blood work but never saw him again.

 

I have put myself on waiting list for seeing the surgeon as well and am planning to do the same for surgery ( Thanks for the suggestion). 

 

 

 

Thank you again for listening to me . I really appreciate it.Its really helpful. 

bartfull Rising Star
bartfull
Posted

What they said. All I have to add is...

 

(((((HUGS)))))

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