Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Pity Party- Sorry In Advance But Just Down

StephanieL

Recommended Posts

StephanieL Enthusiast
StephanieL
Posted

Why do things have to take SO long and be SO freaking difficult when dealing with this kinds of "stuff"?  It shouldn't take a week and a half to hear back from a Dr. or for blood tests to be gotten.  I should't have to do all this work. I am obviously willing to do the work but should I really have to?  And WHY am I doing it? I feel like I am just spinning in circles and for no apparent reason. 

 

Do I just stop? Do I stop trying to figure this all out for my kid and just go with what we're doing?  I just don't know what else to do or how to get people to listen. I use to think i was a really great advocate for my kid but lately I feel like I am making him go thorough things that no 7 year old should have to. I'm starting to think it is all in MY head and not even his. 

 

Sorry. Just really REALLY having a rough time these past few weeks. Thanks for letting me vent. I can't to DH, can't to anyone really IRL cause none of them get even a little bit of it...

 

 

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


LauraTX Rising Star
LauraTX
Posted

I understand how it is to not have the support of people IRL because they don't understand.  All of 2013 I got diagnosed with my many major chronic illnesses, and no one seemed to give a hoot even though it was the hardest time of my life.  Then I had my gallbladder taken out and when a relative called me asking how I was, I was peeved because a simple surgery was nothing compared to dealing with autoimmune diseases.  But you can't fault people for a lack of understanding.  If you try to fix stupidity you will just drive yourself crazy! :)

 

One way I cope with my plethora of sucky conditions is just to have days where I mentally take a step back.  You don't have to physically go anywhere, just do something one day where you check out of reality, whether it is a fun day, quiet day at home, whatever makes you happy.  :)  

icelandgirl Proficient
icelandgirl
Posted

I hear your frustration and get it. IRL I don't have anyone that gets it either. I have people who love me and try...But it's not the same.

I've been struggling with thoughts of why do bad things happen to good people...did I do something wrong to make this happen etc. Driving myself crazy.

Bottom line is you have to get it out...so let it all out here. People on here will understand and care.

I'm sorry that you are having such a hard time. It shouldn't be this hard. Jmo

(((Hugs)))

GF Lover Rising Star
GF Lover
Posted

(((HUGS)))

 

Hang tight!

 

Colleen

dilettantesteph Collaborator
dilettantesteph
Posted

I can relate.  My son was 10 at diagnosis and 17 now, and I can still relate.  Administrators at the schools especially didn't understand.  I think that they didn't want to understand.  They don't get their tax dollars on sick days.  These fad GFers really don't help with people thinking that it's in your head.  Stick with it.  Don't let them get you down.  Take it one piece at a time.  It is worth it.  You do know your kid best.  You can tell when he's sick.  Things will get better.

notme Experienced
notme
Posted

"oh, you can't eat wheat?  that's it?"  <shyeah, i just got back from vacation, explaining all the way...)  

 

NO, THAT'S NOT JUST *IT* - get away from my food with your crumby hands.  you just stuck the pasta spoon into the salad.  thanks.  haha, you accidently drank my beer.  thanks.  no, you can't have a bite...........  or kiss me on the lips........

 

(((hugs)))  hang in there, mama.

 

(i spent $6 on 3 cookies and they suuuuuuuuuuuuuucked.  :(  )

Gemini Experienced
Gemini
Posted

I understand how it is to not have the support of people IRL because they don't understand.  All of 2013 I got diagnosed with my many major chronic illnesses, and no one seemed to give a hoot even though it was the hardest time of my life.  Then I had my gallbladder taken out and when a relative called me asking how I was, I was peeved because a simple surgery was nothing compared to dealing with autoimmune diseases.  But you can't fault people for a lack of understanding.  If you try to fix stupidity you will just drive yourself crazy! :)

 

 

Very well stated, Laura!  My brother is a Type 1 diabetic and a Celiac in denial and my family get the diabetes thing well.  Which doesn't sit well with me because it's a food related, autoimmune illness also.  What don't ya get about Celiac and the plethora of other AI diseases I have too?  I am blessed that I really don't have too many bad days in a year anymore but I worked hard to get to that point. 

 

The remark about fixing stupidity was priceless!  ;)

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


StephanieL Enthusiast
StephanieL
Posted
  • Author

Right now the frustration is with the medical machine :(  School has been great really. Family/friends- ehhh.  I did have to laugh a few weeks ago when someone stated "Oh I can't risk putting this med in a cooler!" when I was explaining a way she could have easily done so. A way we do with DS's epi pens. Ya know, the only think to keep him from dying when exposed to several foods. So no no no, you can't rise it with that drug you mention.  That would be silly!!   It really floored me when she said it like her meds (which ARE very important for her right now, she's going through IVF but more important than Epi?  I just don't see that but then again that is my life so I get her view is a bit different!)

 

I am frustrated that a Dr. GAVE us 2 options 4 years ago to go with. I am REALLY PO'ed that this same Dr. is now suggesting a gluten challenge. When we went to this Dr, they did NO blood work at the hospital and wouldn't order it when they saw how old ours was (thanks for telling us that when we were THERE). Then won't order it (have your ped do it). They aren't interested in a scope NOW after 4 years gluten-free which doesn't compute at all with me. So if we challenge that basically negates the past 4 years of gluten-free diet.  I feel like that means we go from A to C and completely miss ANY useful information that could come from scope B.

 

Frustrated and PO'ed and lost.  

 

Thanks for the pep talk ya'll.  Thanks for getting it!!

BlessedMommy Rising Star
BlessedMommy
Posted

A gluten challenge?!

 

Are they doubting that he has celiac?

StephanieL Enthusiast
StephanieL
Posted
  • Author

A gluten challenge?!

 

Are they doubting that he has celiac?

 

Yeah I guess.  Not really sure why.  He had a sky high tTG, negative scope and all the genetics. They said we could do gluten-free and see if his tTG's came down or we could rescope every 6 months till there was damage. Yeah...no. He was 3 when all this %*@& started. I wasn't going to scope my 3 year old every 6 months thanks!

 

So we follow the advice and are still in this crapola place right now where no one knows what the heck is going on!!!

BlessedMommy Rising Star
BlessedMommy
Posted

Seems pretty clear that it's celiac, assuming that he had improvement on the gluten-free diet. (unless they think that he has Crohn's or there's some other good explanation for the high Ttg?)

 

I honestly don't get why the biopsy is the gold standard for celiac. It is essentially telling you, "Until you are damaged enough, we won't say that you have celiac. So go on your gluten eating way and when you're sick enough, we'll give you our medical endorsement to eat gluten-free."  :wacko:

 

What did Dr. Fasiano say? Seems like with the above factors, he would DX your son for sure.

 

Did his Ttg come down on the gluten-free diet?

StephanieL Enthusiast
StephanieL
Posted
  • Author

He was asymptomatic for the most part when this started, he was 3.  His tTG's have come down but even after 4 years never normalized. That's what we are trying to figure out. Why his tTG's are still elevated.

BlessedMommy Rising Star
BlessedMommy
Posted

Oh okay, I see. 

 

Have they tested for and ruled out other conditions such as Crohn's?

 

I hope that you find answers soon!

 

I'm curious, did you have him initially tested because of family history if he had no symptoms?

beth01 Enthusiast
beth01
Posted

This is what frustrates me most about this disease... unless you are seen by a specialist, someone who really knows celiac disease, you are a science experiment for the doctors.  They really have no clue. If I have a problem now and need to seek professional care, I research my problem well first so I have some clue of what is going on and know I am not getting pushed around.  Doctors are so maddening sometimes.

StephanieL Enthusiast
StephanieL
Posted
  • Author

Our Dr. DID consult with the top people which is why I am so beyond annoyed. 

 

He doesn't have any S&S right now aside from no weigh gain and still elevated labs.  He has developed another AI disease (hypo assuming Hashi's thyroid). Seeing as how he's already developed another AI I don't want to keep letting it slide like an oh well.  I don't think it's anything but this so no, we haven't looked into Crohn's or anything. There's nothing that suggests that would be even a possibility. 

BlessedMommy Rising Star
BlessedMommy
Posted

I'm so sorry that you're having to go through all this.  :(

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. trents
      - trents replied to Maura Gissen's topic in Food Intolerance & Leaky Gut
      5

      Autoimmune Reaction to SO many foods

      I'm a little confused. In your second post you said, "but these symptoms have been ongoing for a long time before the pregnancy" while in your most recent post you say, "I was doing a lot better on the AIP diet. However, I was unable to do the full reintroduction process because I went off the AIP diet when I got pregnant and was experiences chronic nausea...
    2. Maura Gissen
      - Maura Gissen replied to Maura Gissen's topic in Food Intolerance & Leaky Gut
      5

      Autoimmune Reaction to SO many foods

      They did. I was doing a lot better on the AIP diet. However, I was unable to do the full reintroduction process because I went off the AIP diet when I got pregnant and was experiences chronic nausea. This is what makes me believe it's food related. I do check all of my food products and supplements and I am very careful about them being gluten free...
    3. trents
      - trents replied to Maura Gissen's topic in Food Intolerance & Leaky Gut
      5

      Autoimmune Reaction to SO many foods

      Did the symptoms commence after you discontinued the AIP diet? Have you checked all nutritional supplements and oral hygiene products for possible gluten content? Have you recently checked all the labels of purchased processed foods in your pantry to check for formulation changes that might have introduced gluten? Historically, when "glutened" did...
    4. Maura Gissen
      - Maura Gissen replied to Maura Gissen's topic in Food Intolerance & Leaky Gut
      5

      Autoimmune Reaction to SO many foods

      Hi Trent! Thanks so much for your warm welcome and questions! They do, but these symptoms have been ongoing for a long time before the pregnancy. However, it's hard for me to know what's a celiac response vs. a Hashimotos one. I haven't, maybe it's worth getting those checked again?
    5. trents
      - trents replied to Maura Gissen's topic in Food Intolerance & Leaky Gut
      5

      Autoimmune Reaction to SO many foods

      Welcome to the forum, @Maura Gissen! Don't those same symptoms often come along with the territory when pregnant? And then throw in Hashimoto's. Have you had your celiac antibody levels checked recently?
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,982
    • Most Online (within 30 mins)
      7,748
    warrn8x
    Newest Member
    warrn8x
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      71.4k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Autoimmune Reaction to SO many foods

      By trents · Posted

      I'm a little confused. In your second post you said, "but these symptoms have been ongoing for a long time before the pregnancy" while in your most recent post you say, "I was doing a lot better on the AIP diet. However, I was unable to do the full reintroduction process because I went off the AIP diet when I got pregnant and was experiences chronic nausea." CBC = Complete Blood Count. This is the typical bloodwork most people would have done routinely with an annual wellness checkup. I would include things like iron levels, various blood cell counts including reds and whites and other infection fighters. CMP = Complete Metabolic Panel. This would measure things like blood sugar, kidney and liver function, plasma proteins and various enzymes. Non cellular things that the body produces. Also typical of an annual wellness check. Have you tried cutting out dairy and oats? These two are the most common cross reactors in the celiac community. I know it must be tough trying to get adequate calories and nutrition when you are pregnant while at the same time eliminating foods that are good sources of those things.
    • Maura Gissen
      Autoimmune Reaction to SO many foods

      By Maura Gissen · Posted

      They did. I was doing a lot better on the AIP diet. However, I was unable to do the full reintroduction process because I went off the AIP diet when I got pregnant and was experiences chronic nausea. This is what makes me believe it's food related.  I do check all of my food products and supplements and I am very careful about them being gluten free and trying to stay away from corn starch etc. However, I am eating gluten free breads that sometimes have rice flour, yeast, etc. - I seem to do fine with these breads/bread products some days, but then am sick other days.  I have never really had any GI symptoms outside of bloating. My symptoms are dizziness, brain fog, and a general feeling of unwellness or malaise, sort of like when you're going to get the flu.  I have had a lot of bloodwork done over the last three years, but I don't recall doing the CBC, CMP, or a celiac-specific test recently. That's helpful so that could at least provide some insight to see if I'm still being exposed.  Do you see most individual with celiacs having to take a period of time away from even gluten free breads and other cross-reactive foods to let their guts heal? I'm not sure how restrictive to get with my diet again since it's so challenging. 
    • trents
      Autoimmune Reaction to SO many foods

      By trents · Posted

      Did the symptoms commence after you discontinued the AIP diet? Have you checked all nutritional supplements and oral hygiene products for possible gluten content? Have you recently checked all the labels of purchased processed foods in your pantry to check for formulation changes that might have introduced gluten? Historically, when "glutened" did you have GI symptoms or were you a "silent" celiac whose symptoms were non GI. Is what you are experiencing now like what you were experiencing at the time of diagnosis? Have you had recent blood work done (CBC and CMP) and if so, were there any parameters out of norm? I know you have Hashimoto's but you say that is well controlled now? It certainly wouldn't hurt to get celiac antibodies rechecked. Because you are essentially gluten free I would not expect to see any big departures from normal levels but if there are even weak positives it could indicate you are getting glutened from some unexpected source.
    • Maura Gissen
      Autoimmune Reaction to SO many foods

      By Maura Gissen · Posted

      Hi Trent! Thanks so much for your warm welcome and questions! They do, but these symptoms have been ongoing for a long time before the pregnancy. However, it's hard for me to know what's a celiac response vs. a Hashimotos one. I haven't, maybe it's worth getting those checked again? 
    • trents
      Autoimmune Reaction to SO many foods

      By trents · Posted

      Welcome to the forum, @Maura Gissen! Don't those same symptoms often come along with the territory when pregnant? And then throw in Hashimoto's.  Have you had your celiac antibody levels checked recently?
×
×
  • Create New...