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Just Venting (Long)


Celtic Queen

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Celtic Queen Explorer

Ugh, I just need to get this out there to some people who understand.  I have been gluten free for 2 years and I think that has resolved some of my issues, but I suspect that some other health issues have come to the forefront now.  I've been dealing with this off and on for about 6 months.

 

I love my GP.  She is a wonderful, kind, caring doctor.  But she's not understanding what's wrong with me.  I tell her that I'm tired all the time and can barely get up out of bed in the morning.  She wants to describe another anti-depressant for me.  I tell her that I feel like my metabolism is crawling after I get glutened, and she prescribes a stimulant for me.  She wants me to lose weight, and I do too, but I want to figure out what's going on with my body first.  There is something wrong with me and pushing another pill at me isn't going to fix it.

 

So I decided to visit a Naturopath that a friend recommended.  He has his MD but practices integrative medicine.  I called to make an appointment and their next new patient appointment isn't until April!  Yes, April.  I'm so frustrated.  There's are two other clinics in town - one with an MD on staff one one with just a naturopath - but I don't know anyone who has been to either.  And all the reviews on this first guy are awesome. 

 

Of course insurance won't pay for any of this, so it will all be out of my pocket and will likely cost $1,000 or more.  If I'm spending that much money, I want to make sure I go to someone good and that I get the help I need.  But I don't want to keep feeling like crap until April.

 

On top of all this, DS has been undergoing ADD testing for the past month.  He finally got all the testing done and we can't get into his psychologist until the end of next month.  So there's another month of school gone by without him having either medicine or a plan in place.  And the school can't finish his IEP until the doctor is done with his paperwork.  And, I'm going to get him genetically tested for the Celiac genes, but was waiting until we had to go back to the pediatrician to get him on the ADD medicine to have it cheek swab done at the same time.  I have high deductible insurance so each time I walk in her door it costs me $145, hence the need to combine stuff into one visit.  So I have to wait on that too.

 

I'm not normally a hypochondriac but I keep searching the web to find out what's wrong with me.  And I keep coming up with a variety of possible things - thyroid issues, histamine intolerance, other food intolerances, adrenal fatigue.  I want to find out which of these things are causing my issues so that I can start feeling better.

 

It's just frustrating because I feel like I'm stuck in limbo, waiting on other people.  Anyway, thanks for listening to my pity party. 


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notme Experienced

rant ahoy!  lolz 

 

can you get on a waiting list?  sometimes doctors will get cancellations and you can get in earlier. 

Celtic Queen Explorer

I am on the waiting list and the receptionist said they sometimes have cancellations, but she can't say for sure if they will.  If I hadn't heard such good things about this guy, I would go find someone else.  But my options are really limited and he seems like the best NP in town.

notme Experienced

maybe you will get lucky - you do have the luck of the irish going for you ;)

bartfull Rising Star

While you're waiting at least you can test out the "other intolerances" theory. Do an elimination diet. Ditch all of the common foods that cause intolerances like corn, soy, nightshades, dairy, and whatever else you suspect. I'm not familiar with high histamine foods, but salicylates are another one that can cause problems. Get your diet down to the very basics and maybe only try one new food a month so you'll have time to see if you start feeling better.

 

I hope things improve for you soon. ((((HUGS))))

GFinDC Veteran

Somebody posted a link for online medical tests you can order yourself without a doctors involvement a while back.  If you can find a  lab to do them for you, they might be less expensive and you wouldn't have to wait.  You could get thyroid testing done for instance.  I don't remember the lab name but someone else may.

Celtic Queen Explorer

Thanks for the ideas everyone.  I didn't respond earlier because I was sick all weekend with a horrible headache.  I'm going back to basics and doing an elimination diet and keeping a food journal.  I started both a while back but the lack of energy makes it hard for me to stick to it.  I've determined I'm going to this time.


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    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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