Jump to content
  • 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

Won't Give Endoscopy With Breastfeeding


motherwqsalways4

Recommended Posts

motherwqsalways4 Newbie

I went in on friday to have an endoscopy. They knew I was breastfeeding ahead of time. I got conflicting advice on not needing to pump and dump 2 needing to wait 24hrs. When I went in I had pumped enough 2 give me about 6hrs after the procedure (sedation) before my 5mth old would need to nurse. They gave me option to reschedule (with conflicting times_when I pump enough for 24hrs, pump enough for 3 days and last to reschedule once I wean him) or to do endoscopy without sedation. I said I would try to do without sedation as I have been feeling horrible and wanted to just get it done and over with. Well once they started I couldnt handle it and it didnt get done.

Rewind a bit....10yrs ago diagnosed with IBS then self diagnosed with Dr. approving milk intolerance beginning of this month. Sent to gastroenterologist. He wont give me bloodwork until I have and endoscopy..... Isnt there a way to diagnose celiac without endoscopy or if I have gluten intolerance??

Here are my symptoms

constipation mainly with occasional diarrhea

bloating

gas

nausea

acid reflux

aching joints and muscles

ketosis polaris

indigestion

more hairloss then usual (after pregnancy)

depression/anxiety

insomnia

fatigue

low potassium with possible low magnesium

Occasional numbness in fingers and toes (nothing found)

And the gastro just sent me home and told me 2 come back when I can get an endoscopy and to take pepcid or something like it and I should be fine.

Thank you and so sorry it is so long.....

borderline anemia


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



Celiac.com Sponsor (A8-M):



Teri Lou Apprentice

Maybe check out Enterolab (google it)....I have heard other people on here discuss them and they can check stool samples for antibodies to gluten which would indicate a gluten intolerance. They also do DNA testing to check if you have the celiac gene(s).....both of these tests could be done despite the fact you are breast feeding I think

sounds like your doctor is a #$#$#.....hopefully someone can help you to figure things out and feel better soon

sb2178 Enthusiast

Well, that's absurd. I know the research that breastfeeding is beneficial to both mother and child and support it, but seriously, consider the mother's health and quality of life. Are you totally opposed to using formula for one or two days? Did anyone offer that as an option? What did your pediatrician say? And why on EARTH did nobody clearly spell out what you were expected to do beforehand?

I'd make a formal complaint to the hospital/practice.

Cara in Boston Enthusiast

I don't understand why he won't do the blood tests? Aren't you supposed to do the less invasive stuff FIRST, and the endoscopy as the final test? You MD sounds like a jerk (and maybe not well informed.)

Maybe I misunderstood what you wrote - it just doesn't make any sense.

Cara

tarnalberry Community Regular

Find a local doctor who is registered with the American Academy of Breastfeeding. You may need to do some calling around. That VAST majority of meds (including things used for sedation) are NOT contraindicated in breastfeeding (heck, they could just pick one that they use in labor, those don't even have to go through breastmilk but go straight to the baby).

It is common to get conflicting (and wrong) advice. Kellymom.com is a good resource online for meds safe for breastfeeding, as well.

Corissa Newbie

I am a breastfeeding mother who recently had surgery to remove my gallbladder. I too received conflicting advice and was freaking out because my daughter had refused to accept a bottle. My company provided lactation consultant assured me that breastfeeding was not a contraindication to most of the drugs I could possibly receive; my pediatricians said otherwise. I brought my pump with me to the hospital with the plan to pump and keep (with the crazy paranoia that the nurses would wrestle me and make me dump my milk). When I met with the head anesthesiologist he assured me that breastfeeding right after surgery was 100% safe. My consultant felt that intravenous drugs were broken down too quickly by digestive juices to pose a risk to baby, except for the amnesiac they will give you; she suggested waiting 4 hours post procedure. The anesthesiologist told me that infant metabolic rates are so much faster than adults that they actually require significantly larger doses of drugs to have the same effect and that breastfeeding post surgery was completely fine.

In the end, if you feel you need to have the procedue to get a blood test done and a new doctor is not an option, have the endoscopy and do what you feel is best for you and baby in regards to pumping, dumping, storing or feeding. I personally am comfortable and confident following a gluten-free diet despite no blood test and a negative biopsy.

Hope this helps and best of luck!

Noomers Rookie

Greetings from another nursing mother of a 5mo. :)

It might be helpful to call your local LLL. Some leaders are very on top of things and would be able to help. The anesthesia doesn't have to be a problem.

So you went to your family doctor or internist who referred you to a GI? I just had my family doc run a celiac blood panel, which came up positive for celiac and I was told that I don't need the endoscopy. I had my husband look this up (he's a doctor too) and came up with the same conclusion. The scope is not necessary (but does have its place) but the blood test is. Could you find a new primary care doctor who can run those tests for you? It's quick and simple. If you have a good relationship with your OB, you might be able to go that route as well. Doctors tend to respond well when you bring in a printout of information from medical website or expert in the field. Perhaps somebody can link you to some information to give your doctor about testing and whatnot.


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



Celiac.com Sponsor (A8-M):



cassP Contributor

i understand that many docs will not diagnose without a biopsy- BUT- there is no reason that a doc should withhold your freedom to a simple blood test-

you most definitely can get a blood test before a biopsy- that's just ridiculous. and if they cant help u- find a doc who will. both me and my father have had the panel without the biopsy.

and also make sure that you're eating enough gluten prior to blood test. im so sorry you had to attempt the endo without sedation- that must have been horrific!

with your gluten suspicions + hair falling out + previous pregnancy-> i would say you should also get a full thyroid panel with your celiac panel.

much luck to u!

motherwqsalways4 Newbie

Thank you all so much for your replies.

I checked out the enterolab am definately considering that..or possibly the ob/gyn route???

My primary/internist wouldnt run the blood work and sent me to the GI who of course also wouldnt

My DS can not use milk based or soybased formula so I am his healthiest and reallyonly choice in eating so I do need to be his sole food supply:)We are concerned in using the hydrolzed milk formulas as we dont want him to be in tummy distress.

I've had a complete thyroid work up as in 2003 I had half my thyroid removed due to a nodule that was possibly cancerous Thank goodness it wasnt cancer and the 1 side left is still working great without meds. I have to have it checked every 6mths so we can catch any issues ASAP. (Which btw I was breastfeeding my 2nd son then and they only had me pump and dump for not quite 12hrs back in 2003 for regular anesthia...)

I didn't really even know that you could be dx'd with just blood work everything I have (or just about everything) has said once thats positive (blood) the 'gold standard' is a positive biopsy--thank you so much for telling me that too. I am trying know to find whatever I can to take to whoever I can find if I dont just do the enterolab.....

Thank you all so much all your great replies have really taken a load off my mind......now on tofinding out......

cassP Contributor

Thank you all so much for your replies.

I checked out the enterolab am definately considering that..or possibly the ob/gyn route???

My primary/internist wouldnt run the blood work and sent me to the GI who of course also wouldnt

My DS can not use milk based or soybased formula so I am his healthiest and reallyonly choice in eating so I do need to be his sole food supply:)We are concerned in using the hydrolzed milk formulas as we dont want him to be in tummy distress.

I've had a complete thyroid work up as in 2003 I had half my thyroid removed due to a nodule that was possibly cancerous Thank goodness it wasnt cancer and the 1 side left is still working great without meds. I have to have it checked every 6mths so we can catch any issues ASAP. (Which btw I was breastfeeding my 2nd son then and they only had me pump and dump for not quite 12hrs back in 2003 for regular anesthia...)

I didn't really even know that you could be dx'd with just blood work everything I have (or just about everything) has said once thats positive (blood) the 'gold standard' is a positive biopsy--thank you so much for telling me that too. I am trying know to find whatever I can to take to whoever I can find if I dont just do the enterolab.....

Thank you all so much all your great replies have really taken a load off my mind......now on tofinding out......

no- you are absolutely correct-> many many docs will NOT diagnose u without the biopsy! for sure. but there's no reason why you cant have the celiac blood panel. i dont think they should be allowed to deny u that. this is a free country. maybe you're afraid of an endoscopic procedure and just want to get an idea via blood test, u know??

my Pcp did my 1st celiac panel, and it was "inconclusive"/partly positive- so she sent me to a Gi. he then did another celiac panel. when the results came back inconclusive again, we talked and he said we should next proceed with the endoscopy. but since my insurance wouldnt pay for 2 procedures (and i really wanted the colonoscopy to rule out other issues- as i had a lot of worries, and i did not need the "gold standard" to know that i had a gluten problem). so i got the colonoscopy.

2 years later, after my gene test, and 1st case of DH, i self diagnosed. my Gi agreed with me, but i honestly dont know if he put it in my charts- cause i did not get the biopsy. which im actually glad i didnt get the endo- because he only put me on a 2 week gluten challenge- and the whole procedure could have been a waste of time & money.

my dad just got a panel done too- by our PCP. if you want one- you should be allowed to have one.

of course i had to beg my pcp for a recent antibodies test... go figure. ridiculous.

good luck to u!

  • 3 weeks later...
milkmommy Apprentice

I am a breastfeeding mom and they are doing my endoscopy with no concerns. There are sedatives that have little to no risk for baby through your milk. Some may require you wait 4 hrs at most. I'm in Ontario Canada so maybe that's the difference.

milkmommy Apprentice

Just wanted to let you know they did my endo today even though I am a breastfeeding mom. They gave me fentanyl and midazolam with no problems. I even spoke to an organization called mother risk who informed my I could breastfeed 4 hours after my endo with no risk to baby. Here is their website and I recommend calling them.

Open Original Shared Link

All the best and congratulations on breastfeeding. Its the best gift you can give your child.

Archived

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

  • 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. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - MichaelDG posted a topic in Board/Forum Technical Help
      0

      celiac.com support

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,327
    • Most Online (within 30 mins)
      7,748

    dnamutant
    Newest Member
    dnamutant
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • MichaelDG
      How do I contact someone at celiac.com concerning the cessation of my weekly e-newsletter? I had been receiving it regularly for years. When I tried to sign-up on the website, my email was not accepted. I tried again with a new email address and that was rejected as well. Thank you in advance!
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.