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We Got A Gi Referral!
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Started by Lfrost,

4 posts in this topic

Posted

Ok, so my doctor is still an idiot, but at least we got a referral! Thank goodness I insisted on my husband getting off work early and coming with us to my son's appointment.

So we got in there and talked about my son's improvement since cutting his allergies out, but our concern is with the constipation still recurring. My doctor thinks the improvement on the diet and the constipation is all behavioral?! I showed him pictures of my son's outbreaks in rashes after eating certain foods, and the doctor said 'that would be suggestive of allergies', but in the next breath went back to it all being behavioral and Colton will grow out of it, blah, blah, blah...

Everything I showed or argued was put on a deaf ear. Then my husband speaks up and says he thinks it is something more, something GI related. The doctor asks if we would like a referral for a pediatric GI at OHSU. Um, hello! I am standing right here and have been asking for a referral for months!!! In the next breath the doctor did have to add that he doubts a GI will find anything wrong, but if it will put our minds to rest then fine.

Anyhow, at least we have a referral now. Unfortunately, our doctor's office takes care of the referral process, so I can't switch doctors at least until we have the GI office call and get us in! As soon as we hear from them, bye bye doctor!

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Posted

Doing the happy dance right along with you! :D

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Posted

Ok, so my doctor is still an idiot, but at least we got a referral!

LOL. As the old saying goes, "even a broken clock is right twice a day". I am very happy for you! Hope all goes well.

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Posted

How frustrating! I was told over and over again that my sons problems were all due to constipation and that he wasn't getting enough fiber (this when the kid lived on fruit and whole wheat!) I feel your frustration when they just dismiss you! Glad you got the referral. Take husband with you to the appt. They tend to think us moms are just a bunch of emotional over-reactors, but if Dad gets involved, there must actually be a problem. Argh!

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Go To Topic Listing Celiac Disease - Parents of Kids or Babies With Celiac Disease

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      By GFinDC · Posted

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    • GFinDC
      Overwhelmed and unable to accept

      By GFinDC · Posted

      Hi egs1707, Welcome to the forum! Irene is right, you should not be gluten-free until all testing is completed.  The celiac disease tests are checking for immune system reactions and damage, and when you go gluten-free that starts to decline.  So the tests may not show the true immune reaction that is going on or the normal damage.  They may not show any damage in fact and you could get a false negative diagnosis.  You body starts healing and out the window go the test results.  Your doctor gets an "F" grade if they told you to go gluten-free now. But you aren't alone in having a doctor who doesn't understand the celiac disease testing process.  Many of them are woefully ignorant of proper testing for celiac disease.  That why the current estimate is somewhere in the range of 85% of celiacs in the USA are undiagnosed.  It doesn't help when doctors screw up the testing themselves.  Or refuse to test people.  Which is also far too common. I was vegetarian for 5 years.  I am not anymore and don't recommend it.  It is hard enough living gluten-free and finding safe food to eat and adequate nutrition for healing a damaged body.  I used to eat a lot of soy products when I Was vegetarian, but now soy makes me physically sick.  We can sometimes develop reactions to foods we eat a lot of while our guts are inflamed IMHO.  Soy is not a healthy food anyway from my reading. I can't do dairy now but may people who start out lactose intolerant end up being able to eat dairy after they have recovered. The best advice I can give is to avoid as much processed food as you can, and eat mostly whole foods you cook yourself at home.  When you do cook, cook big, and freeze the leftovers.  That way you can quickly take a small portion of food out of the freezer and reheat it.  Being celiac it is more important to learn how to cook.  Unless you are wealthy all those gluten-free processed foods add up quick.  Plus gluten-free processed foods often are lacking in fiber and vitamins. You'll want to watch out for vitamin deficiencies also.  Since celiac disease damages the villi in the small intestine, the vitamins and minerals etc are not digested and absorbed well.  So celiacs can be low on vitamin D, calcium,  and one other one I forget.  Vitamin B-12 may be low also ( it is important for nerve health).  Then there are some vitamins that vegetarians tend to have problems getting enough of also to consider. Adjusting to living with celiac disease means adjusting to a new diet and some lifestyle changes.  There's lots of us that make that change every year though, it's not impossible.  You will most likely end up eating better, more nutritious food than many of your peers.  And you will avoid a pletora of additional health concerns that can come along with untreated celiac disease. Learning to cook can be an adventure and you may enjoy it once you start.  you may find your taste in foods changes once you have been gluten-free for a while too. Recovery from celiac disease can take some months.  The immune system is very serious about protecting us and doesn't give up quickly.  Also it always remembers so it will react to even small amounts of gluten.  I live with gluten eaters at home and I do fine.  I just am careful about rinsing dishes off and so forth before using them. There is a Newbie 101 thread at the top of the coping with forum subsection.  It may provide some helpful info.  
    • GFinDC
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      That's great to hear you are feeling better Nightsky.  I really think when our GI systems are in distress already that it doesn't take much to set off symptoms.  Once I eliminated the other foods that cause me symptoms that helped a lot too.  And added some extra vitamin D to my diet and selenium. Many of us have developed reactions to other foods besides gluten and need to avoid them to keep symptoms at bay.  For me nightshades, carrots, soy, dairy, and celery all cause symptoms.  It took me awhile to figure out all those food culprits, but it made a big difference getting them out of my diet. But we are all individuals, and our bodies react individually.  So you may or may not have additional food intolerances develop. Celiac is one of those life journey things and we learn as we go.  Just keep the bottle of aspirin handy!
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