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Recently Diagnosised...questions!

Free-CountryGirl

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Free-CountryGirl Apprentice
Free-CountryGirl
Posted

Hi Everyone!

I just recently self-diagnosed myself, seeing as I had all the symptoms and the doctor ran literally tons of tests and said I was healthy, I tried gluten free for a week and felt great! Of course, the doctor still isn't convinced....whatever. I'v had symptoms for the past couple of years, and they have progressively gotten worse, especially as of late. I gained a lot of weight, about 30 lbs, despite the fact that I eat healthy, and my calories always fall within the range of 900-1400, even though I'v been told my body needs a lot more. Anyways, my main question is, will I finally be able to lose all this weight now?? Has this happened to anyone else, and can they share their experience? I mean I was gaining about 2lbs a week and not eating nearly enough to be doing so, it was just insane.

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j177 Newbie
j177
Posted

Hi, I am new to the forum, so I hope I am doing everything okay. I assume your doc is a GI doc and that all those tests included a biopsy, or more correctly, an endoscopy? Blood tests have a false negative rate that is too high to be completely reliable. If you truly have had all the right tests, congratulations, you don't have celiac. Many people digest food better and feel better on a gluten free diet. Watch out though, a lot of the gluten free foods can be pretty dense and high in calories.

Free-CountryGirl Apprentice
Free-CountryGirl
Posted
  • Author

Well see, not exactly. My doc refused to test me for celiacs. She literally would not do it, saying it was unnessecary. Instead she continues to run tests for mono, thyroid, Limes disease, etc. and all come back as perfectly healthy. I become very sick for hours if I eat anything with gluten in it, which is what led me to my conclusion of Celiac's Disease or Gluten intolerance.

Free-CountryGirl Apprentice
Free-CountryGirl
Posted
  • Author

I guess i wasn't very clear about the tests part, oops! sorry! But yeah, my dr just will not listen to me at all. Ver frustrating.

sandsurfgirl Collaborator
sandsurfgirl
Posted

Hi, I am new to the forum, so I hope I am doing everything okay. I assume your doc is a GI doc and that all those tests included a biopsy, or more correctly, an endoscopy? Blood tests have a false negative rate that is too high to be completely reliable. If you truly have had all the right tests, congratulations, you don't have celiac. Many people digest food better and feel better on a gluten free diet. Watch out though, a lot of the gluten free foods can be pretty dense and high in calories.

I must correct you on your post here. If you have all the tests and they come up negative that does NOT mean you don't have celiac. Endoscopies have false negatives too. You have to eat a heck of a lot of gluten to come up positive on an endoscopy. They only take 4 miniscule samples so if they miss the bad spots then you are going to get a false negative.

People who don't have celiac are not going to get much benefit from a gluten free diet unless they are eating clean and healthy which, anybody feels better if they eat healthier. But MOST importantly they won't feel sick if they go back to eating gluten.

Weight gain has been a tough one for me with celiac. I have been losing weight but it's slow as molasses and I have to exercise hard and be vigilant about my diet. I've given up dieting for the holidays but kept on my workout so I can maintain. It's bad enough being gluten free, I at least want to enjoy my gluten free versions of holiday foods.

sandsurfgirl Collaborator
sandsurfgirl
Posted

Well see, not exactly. My doc refused to test me for celiacs. She literally would not do it, saying it was unnessecary. Instead she continues to run tests for mono, thyroid, Limes disease, etc. and all come back as perfectly healthy. I become very sick for hours if I eat anything with gluten in it, which is what led me to my conclusion of Celiac's Disease or Gluten intolerance.

FIRE that doctor and file a complaint to anyone and everyone you can! That is despicable. How can she refuse to run a simple blood test??? Now she screwed you because if you are gluten free you will NOT come up positive on the tests even if you have celiac. Which means if you need a definitive diagnosis then you have to eat a ton of gluten and make yourself sick as a dog for about 5 weeks before you test.

If I were you I'd consider myself celiac and stay gluten free. Doctors like her are why I suffered 40 long years before diagnosis. I think they should all lose their medical licenses! I'm so angry every time I hear about one of them!

Kimbalou Enthusiast
Kimbalou
Posted

Hi Everyone!

I just recently self-diagnosed myself, seeing as I had all the symptoms and the doctor ran literally tons of tests and said I was healthy, I tried gluten free for a week and felt great! Of course, the doctor still isn't convinced....whatever. I'v had symptoms for the past couple of years, and they have progressively gotten worse, especially as of late. I gained a lot of weight, about 30 lbs, despite the fact that I eat healthy, and my calories always fall within the range of 900-1400, even though I'v been told my body needs a lot more. Anyways, my main question is, will I finally be able to lose all this weight now?? Has this happened to anyone else, and can they share their experience? I mean I was gaining about 2lbs a week and not eating nearly enough to be doing so, it was just insane.

Why won't our dr. just order the blood tests for Celiac? My dr. did it as soon as I told her I had GI symptoms. Your Dr. should order them...or did he already do them? I'm confused.

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Kimbalou Enthusiast
Kimbalou
Posted

Well see, not exactly. My doc refused to test me for celiacs. She literally would not do it, saying it was unnessecary. Instead she continues to run tests for mono, thyroid, Limes disease, etc. and all come back as perfectly healthy. I become very sick for hours if I eat anything with gluten in it, which is what led me to my conclusion of Celiac's Disease or Gluten intolerance.

Ok, sorry, here's what I was asking about. Yep, you need to get a new Dr!!! I went to mine for the very first time, had to switch to her, and she ordered the test for Celiac right away...along with other tests, too of course, but she had no problem at all ordering them! And I go to a big HMO that sometimes gets a bad rap...well she is on the ball! you need to look for a different dr!!

FooGirlsMom Rookie
FooGirlsMom
Posted

Hi :)

I am one of those people who were struggling with losing weight (was gaining on a normal very healthy diet) and when I started a physically-demanding job (3 hours+ a day of sweating) I was not losing for 4 straight months on gluten. ???

So fast forward to a month ago. I go Gluten Free and I'm immediately losing bloat & weight. It's been about a month now and I've lost at least 10 lbs. I went down a whole size. I don't know if this will slow, but wow what a difference.

I also started supplementing with vitam b complex sublingual drops (needed the energy) and taking probiotics. I did those things for a month before the gluten-free diet and while I had a bit more energy I didn't lose. It was switching to gluten-free that started the weight loss and so far it looks like 2-3 lbs per week. I'm not trying to diet either...just eating when I'm hungry. I think I'm one of those people whose body was just so out of whack that I couldn't lose weight. My best friend remarked so many times for the past 15 years...how are you overweight? I don't get it. You eat cleaner than anyone I know and you don't eat a lot!" I never understood it either until 4 weeks ago. I'm 42 and have been using the Induction version of Atkins to control symptoms and lose some weight (usually couldn't lose more than 10 lbs) the better part of my adult life.

Hope that helps,

FooGirlsMom

Loey Rising Star
Loey
Posted

FIRE that doctor and file a complaint to anyone and everyone you can! That is despicable. How can she refuse to run a simple blood test??? Now she screwed you because if you are gluten free you will NOT come up positive on the tests even if you have celiac. Which means if you need a definitive diagnosis then you have to eat a ton of gluten and make yourself sick as a dog for about 5 weeks before you test.

If I were you I'd consider myself celiac and stay gluten free. Doctors like her are why I suffered 40 long years before diagnosis. I think they should all lose their medical licenses! I'm so angry every time I hear about one of them!

I'm with you about firing the doctor. Demand the test or fin a new doctor. Whether or not the believe it doctors are not Gods!

Loey

TPT Explorer
TPT
Posted

Aside from whatver might be going on with gluten, if your calores are closer to 900, that's not enough. For some people, if you don't eat enough your body will store weight. You may actually need to eat more. Certainly make sure you aren't skipping meals.

Free-CountryGirl Apprentice
Free-CountryGirl
Posted
  • Author

Oh my goodness thank you all so much for your replies and advice!! FooGirlsMom, I tried Atkins as well! It sort of helped, but it was what also helped me notice how I felt TONS better without gluten. I don't really want to make myself sick anymore, just to run a few tests which are not exactly reliable, so I am considering myself gluten intolerant, possibly celiac. Either way, the title doesn't matter to me, I just know I simply cannot eat gluten. I did go for a week without gluten before, and then went back to eating gluten and immediatly felt awful, so I determined that as the culprit. I tried eliminating dairy, but that didn't help, and I tried eliminating sugar which made me feel a tiny bit better, but certainly not 100% myself. It was only when I eliminated gluten entirely that I feel a increasingly better every day.

Doctors can be so arrogant sometimes. Don't they realize we know our bodies better than they do??

GFshay Apprentice
GFshay
Posted

Oh my goodness thank you all so much for your replies and advice!! FooGirlsMom, I tried Atkins as well! It sort of helped, but it was what also helped me notice how I felt TONS better without gluten. I don't really want to make myself sick anymore, just to run a few tests which are not exactly reliable, so I am considering myself gluten intolerant, possibly celiac. Either way, the title doesn't matter to me, I just know I simply cannot eat gluten. I did go for a week without gluten before, and then went back to eating gluten and immediatly felt awful, so I determined that as the culprit. I tried eliminating dairy, but that didn't help, and I tried eliminating sugar which made me feel a tiny bit better, but certainly not 100% myself. It was only when I eliminated gluten entirely that I feel a increasingly better every day.

Doctors can be so arrogant sometimes. Don't they realize we know our bodies better than they do??

Unfortunately doctors just don't get good enough training on Celiac and other diet-related problems because there are very few medications that make a difference, which means drug companies don't provide the training on it the way they do for heart disease, diabetes, etc. If you only recently started being gluten free, I'd recommend finding a doctor who will rush an endoscopy for you-- and maybe try to eat a little gluten before then so you keep up whatever damage might be there if you have Celiac. The thing is, it makes a difference to know whether it's Celiac or an allergy or sensitivity... complications can occur with each in different ways. You never know... it might be an intolerance to some other food group that often includes gluten (only one specific grain perhaps). It would make a difference to know so you can eat accordingly and be as healthy as possible.

But do switch doctors if you need to. My doctor did successfully diagnose me but now I'm not happy with her follow-through on managing the disease part (nutrition, treating gluten symptoms like nausea, etc). Everyone I talk to says to be sure to always self advocate!

Loey Rising Star
Loey
Posted

Unfortunately doctors just don't get good enough training on Celiac and other diet-related problems because there are very few medications that make a difference, which means drug companies don't provide the training on it the way they do for heart disease, diabetes, etc. If you only recently started being gluten free, I'd recommend finding a doctor who will rush an endoscopy for you-- and maybe try to eat a little gluten before then so you keep up whatever damage might be there if you have Celiac. The thing is, it makes a difference to know whether it's Celiac or an allergy or sensitivity... complications can occur with each in different ways. You never know... it might be an intolerance to some other food group that often includes gluten (only one specific grain perhaps). It would make a difference to know so you can eat accordingly and be as healthy as possible.

But do switch doctors if you need to. My doctor did successfully diagnose me but now I'm not happy with her follow-through on managing the disease part (nutrition, treating gluten symptoms like nausea, etc). Everyone I talk to says to be sure to always self advocate!

I agree that not enough doctors have proper training or experience with Celiac Disease. I was just diagnosed in June after an illness kept me bedridden for 6 weeks (turned out to be the illness that led me to a diagnosis of celiac). I was not gluten-free at the time so all of my tests were glaringly positive. I was moving to a new state and loved my old GP and GI. My GI wanted me to get a capsule endoscopy as soon as I found a new I because she felt my celiac had gone undiagnosed for decades. My new GI in my new state didn't think it was necessary. I was in excruciating pain and he was pretty dismissive. I was ready to change doctors but decided to put my foot down. He ordered the capsule endoscopy and lo and behold I had an ulcer in addition to the celiac. He called me the day after the test (which was pretty quick as they told me it would take 3-4 weeks to read the results) and he did a 360 in his attitude and demeanor. I had a biopsy of the ulcer about three weeks ago (after waiting 4 weeks for it to be schedules- he wanted special anesthesiologist) and I see him in about 2 weeks to discuss the results. he did find several things during the EGD (like no vilii in my duodenal). If I don't think he's treating me seriously I will go to another doctor. Bottom line is that we all have to be proactive and demand that the tests we need are ordered. I also have allergies to certain foods that are gluten free.

I don't remember if it was this thread that I posted a link to an interesting video by a doctor on Celiac Disease. Forgive the brain fog if it was here.

Have a happy and healthy (gluten free Thanksgiving)

Loey

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