taynichaf

Like I said on another one of your posts, get the test results. Get a copy of the labs and the pathology report and the procedure report. Ask some questions of the doctor. Sounds like you let him tell you you have GERD and a hernia and you don't seem to know what they are as you thought they were the same thing. You need to speak up and ask what that is and what the treatment is. Do they want to surgically repair the hernia? If not, what follow- up do they want to do for it?

I know you are young, but its your body and you need to speak up and ask questions and try to understand.

Alright I will. Thanks. And they tried to tell me about it but I was out of it.... So they told my mom and I guess she didnt do a very good job at telling me :/

so the more whole grain, Fiber One type of products I ate before going gluten free, the more stopped up I became, no matter how much water I drank.  My anxiety increased because I would get so upset over not going, and the snowball effect happened.  There were times I drank a whole bottle of magnesium citrate and not a thing happened  Ex-lax gave me bad cramping, but no relief, and Ducolax worked but I became concerned because I would have to take 5 tablets to get things moving, and the max dose is supposed to be 3.  I don't do well with mixing thick fiber supplements in a glass, and Miralax was prescribed to me by my GP, but it didn't work well for me at all.  Psyllium did nothing for me.  I was jealous of friends who could eat a bran muffin and clean out their insides because it would plug me up more 

 

Sure enough on my first visit to the GI and talking about bloating and constipation, he suggested more fiber and water, but I said been there done that   luckily, he listened and I started getting tested and now with going gluten-free, regularity is returning!!  One thing I am very diligent with is my water intake.  I love water, and yes, I really do mean that!  I would much rather have water over soda or alcohol.  

 

Current routine-I wake up each morning, take a few Citrucel with water on an empty stomach, and that helps to get things moving.  Anxiety has greatly reduced going gluten-free, so that certainly helps as well!!

 

Fiber is needed, but you have to find the right fiber for you.  Personally, fiber from fruits and veggies agrees better with my system, but my hope is that someday I can get rid of the Citrucel, but for now it's needed 

 

Edit: I also got diagnosed with GERD and a hiatal hernia during my endoscopy.  I really hope you are able to find someplace to get the DGP test performed!  Also my GERD has gotten better going gluten-free.  I would suggest reading the book Why Stomach Acid is Good for You before taking powerful acid reducing drugs.  It seems to create more problems than it fixes.  My advice would be to try eating gluten-free first to see if it helps the GERD.  good luck!  Open Original Shared Link

Grrr.. Well I got every test now EXCEPT the DGP... That was the only one they didnt have. But whateverrrr.

If a glucose monitor isn't in the budget, see if you can borrow one. You still must buy the lancets/strips, and the strips are the most expensive part.

Have you been diagnosed with Celiac or NCGS? Sorry, I can't see footers on my phone.

The test a doc can reco is something that should be covered under insurance; however, if you are pre diabetic or above the hypo range (but still getting that feeling) it won't show it. It tests for a specific glucose drop. Your doc can order a breath test for SIBO, and an HBA1C for prediabetes.

You may be paranoid from withdrawal, but you know if you crave sugar....and there's more to it than going gluten-free. I hope you find the support you need. Id hate for you to limp along, wondering why things aren't progressing like you feel they should. And if glucose/adrenals/SIBO/yeast are issues, also, it can be tough to feel as well as you'd like.

And btw, I will get those things that you say, once I get a job. Thanks so much

I will not give up until I find what is up with me.  Reading other peoples stories make me realize I am not on my own.

GOOD! Just repair yourself... these last two months for me have been helllll... because I keep finding new things that could be wrong with me, and I cant stop eating gluten until I get a full panel done... I think its almost over though... YAY!

Anyways, good luck

vanilla ice cream, hershey syrup, a scoop of peanut butter, and a banana with a splash of milk...  blend...  I have to eat eggs, bacon, and two pieces of gluten free bread in the morning to stay full passed 11a.  I usually do steak, chicken, or pork of some kind for dinner with sides.  If you're staying hungry, adding calories is easy.  

 

not sure if that's what you're looking for but I stay hungry all the time and meats/calories help.

Ahh... My issues isnt weight loss its actually weight gain btw ha. But once I start gluten free I drop weight fast, no matter how much i eat... But I dont know how my body reacts long term... I hope I dont stay hungry and gain a bunch of weight :/

OMG!  I get all upset over road kill too!  I always feel sorry for the poor whatever that gets killed....especially if it's a deer.  And yes, I do like to eat venison but I don't kill them myself.  I'm such a hypocrite.......

I dont get upset if I see road kill... but if im in a car that runs anything over i will freak out and have like a panic attack and start tearing up ha. weeeeird.

I agree  very  sad... some  larger  birds ie  hawks,   owls  &  such  can  actualyl  pick up  kitties  , fly off  with them   &  have them for  supper... that  really upsets  me......   poor  stray  kitties...

OMG I AM NEVER LETTING MY CAT OUTSIDE ANYMORE

  

How about if we see what tests she has already had? Explore the diagnoses she has been given? Insurance won't pay for an immediate repeat of tests.

Ohh pooop... I hope they do! I actually had the same test like within the same month for this... I'm pretty sure insurance covered it.. SP hopefully they'll cover this last one! Because my current insurance ends tomorrow... and thats when my doctors appointment it..

Could you look up "laboratories" in your yellow pages phone book or online?

That would be step one.

 

Worst case scenario, write down the tests you want and make sure they are written on the blood test requisition sheet you get back

but you still have to go to a lab that does those same tests.

 

I saw an immunologist for another problem and I mentioned about my possible Celiac

and she wrote to my PCP recommending the obsolete AGA celiac tests.

Even my PCP wanted me to do the AGA tests and didn't know about the better DGP tests.

You can't count on doctors knowing this stuff.

I did... Either I just can't find the info on blood testing or it just isnt there ha. Well... I have the list of tests printed out, along with a list of symptoms.. so hopefully I'm good to go. Ahhhhhh I really hope this doctor listens to meeee.

I should train my dogs to chase them away... ha. But it was just so sad cause theres nothing I could do, but I wished I could help. I now hate crows... :/

I don't think that you should be worried... I have rapid weight loss on a gluten free diet as well. But if this persists and you get down to an unhealthy weight THEN your should worry, lol. But from what i've read, most of these weight thinks level out eventually... Just give your body some time to heal

Ohh... and go get tested before it's too late!!

Lol, this is VERY random, but I needed to share this with someone...

When I was driving, I saw a bird carrying another bird that looked like it in its claws and flying away from crows, trying to attack the bird in the claws

Lol, I'm stupid... But seeing this just made me want to cry.... WHYYYY DO I HAVE TO BE SO FREAKING SENSITIVE/EMOTIONAL!?!? Lol.

If a glucose monitor isn't in the budget, see if you can borrow one. You still must buy the lancets/strips, and the strips are the most expensive part.

Have you been diagnosed with Celiac or NCGS? Sorry, I can't see footers on my phone.

The test a doc can reco is something that should be covered under insurance; however, if you are pre diabetic or above the hypo range (but still getting that feeling) it won't show it. It tests for a specific glucose drop. Your doc can order a breath test for SIBO, and an HBA1C for prediabetes.

You may be paranoid from withdrawal, but you know if you crave sugar....and there's more to it than going gluten-free. I hope you find the support you need. Id hate for you to limp along, wondering why things aren't progressing like you feel they should. And if glucose/adrenals/SIBO/yeast are issues, also, it can be tough to feel as well as you'd like.

Alright, thanks.

ANd no I have not been diagnosed. My tests were negative for celiac so I just consider myself NCGI.

This is allll soooo confusinggggg! Ughhhh! But thank you so much for the help... Hopefully I will be able to get all the tests that I need.

Ohhh nvm, I get it. Yeah, I know I had this problem pre gluten free, but then, i just thought it was just another celiac symptom

Your doctor probably won't do a thing, and you'll probably continue to suffer. Sorry, I'm not getting the congeniality award online or at home today.

You're getting a sugar high - your adrenals are getting a kick from sugar - something isn't working right.

My doc would say yeast overgrowth or SIBO. If you crave sugar or need it like that - something is wrong.

She would also put you on adrenal support and give you the sugar speech (which I didn't get because by the time I got to her sweets made me want to vomit). But I did get the adrenals speech, supplements, and the eating-on-a-schedule pre diabetes/insulin resistance speech.

Could this be a stage? Yes. But it existed pre gluten-free. Not likely. You are compensating - autoimmunies do it VERY well. It's a process, healing.

Hmmff.. Well I mean... I have anxiety super bad right now because of gluten... i'm 18.. Recently moved and have no money to buy any of this stuff that you say... I also can't tell my mom about this, because shel just blow it off.. I cant even tell her about any doctors appointments i schedule anymore either. So I guess right now, I just can't organize my brain to figure out what to do about this! I'm going to atleast bring it up to my doctor to see what he has to say first... then if he doesnt do anything about it, i'll try and find the next step once im able to think straight.

I don't really get what your saying in the last sentence?... that because i eat gluten free is why my blood sugar is low?

WTF! That would make me so angry... And I cant believe they still dont support you despite a diagnoses!

Just stick to your lie and plan... Or you could hide and bring your own food to the resturant just to (hopefully) piss them off

Good luck! Your in a tough situation!

taynichaf,   with your Celiac testing experiences with doctors so far you know they know squat about how write up a Celiac blood test requisition.

 

I looked up my local labs to compare their Celiac panels (3 labs)

 

They were all expensive but one offered more.

 

One lab offered 4 tests as part of their panel.

 

I got the price and the TEST CODE from their web site.

Then I phoned the lab to double check the accuracy of the information as they still had old Celiac panels that they weren't offering.

 

I had talked about it with my doctor prior and he wanted me tested as well so he was ready for the next step:

 

I gave my doctor  the actual TEST CODE in writing and he wrote it on the blood test requisition.

 

We double checked that it was the write TEST CODE.

 

I went to the lab with the requisition sheet got the blood test done.

 

Don't expect the doctor to know what she's doing LOL.

 

You have to do your homework as listed above BEFORE you see her.

 

You're the boss; she's your employee.

 

Good luck.

Yeaahhh.. I can't find anything like this.. PRAY THAT I GET A DOCTOR THAT WILL LISTEN TO ME, PLEASE!

Why don't you get a copy and see what they ran and what the results were? 

I do have copies of the tests... somewhere ha. But i'll find them and bring them to my doctor app.

Hi! I'm gluten intolerant and am from Appleton... I can't believe there are other like me, so close!

taynichaf,   with your Celiac testing experiences with doctors so far you know they know squat about how write up a Celiac blood test requisition.

 

I looked up my local labs to compare their Celiac panels (3 labs)

 

They were all expensive but one offered more.

 

One lab offered 4 tests as part of their panel.

 

I got the price and the TEST CODE from their web site.

Then I phoned the lab to double check the accuracy of the information as they still had old Celiac panels that they weren't offering.

 

I had talked about it with my doctor prior and he wanted me tested as well so he was ready for the next step:

 

I gave my doctor  the actual TEST CODE in writing and he wrote it on the blood test requisition.

 

We double checked that it was the write TEST CODE.

 

I went to the lab with the requisition sheet got the blood test done.

 

Don't expect the doctor to know what she's doing LOL.

 

You have to do your homework as listed above BEFORE you see her.

 

You're the boss; she's your employee.

 

Good luck.

Okay. I just really don't know how to get test codes... I have no idea what blood labs are even avaiable around here. But I will try and look it up right now.

There's a test for it, ask your doctor.

The BEST way, IMO, to test your glucose levels is to buy a home glucose monitor and track your levels for a week - when you wake up, before you eat, after you eat, and 2 hours after meals. Write it all down, and keep a food diary with it. THEN go to the doctor.

You can have hypo symptoms without technically having hypoglycemia - probably related to a hormonal imbalance or adrenals, or even pre diabetes.

You can learn to manage it, and I've been successful at calming mine down. My thyroid plays a HUGE part in my hypoglycemia, I've discovered.

Hmm okay! I think i'm going to wait and see what my doctor says, or if it goes away after being gluten free for a longer period of time.

I guess I'm not saying I HAVE hypo, I just think that something in that nature is effecting me. I normally probably wouldnt even think that I had a blood sugar problem, but i'm sort of convinced because a long time ago I thought I was just pre diabetic or something just because some of my symptoms matched it... But this was during the time that I was eating the healthiest I have ever eaten in my life.. so i thought..(wheat bread).

Plus, through dieting I found that I need sugar... The more sugar I eat the better I feel.. sort of. And this is probably because my diet used to be sooo bad, filled with sweets.

So I am brand new to this site, as well as the gluten free world for about a month and a half now. Why did I go gluten free? Well, for the past two years I have been having joint pain and odd food "allergies" that would come and go. I went to the doctors office last year and was sent to rheumatiodology then brushed off with a clean bill of health. I went again this year (different doctor, much better than the previous) she sent me to an allergist and talked to rheumatoidology for me. Rheumatiodology said my hands (dry, cold, changes colors, joint pain and stiffness that don't get better with use) are "interesting". The allergist basically told me that it cant be an allergy since it goes away (nothing I didn't expect), but wanted to do a blood test (just for funzies I thought). I basically went to the allergist to jump through one more hoop so my doctor would look down other avenues. However, when I got my results back my allergist told me it tested positive for the lab but it was still borderlined (IGA 21.45). He told me that he does't suggest a change in diet but he would like me to test again in three to six months.

 

I didn't even understand what gluten or gluten intolerance was until my results came back and researched it online. I was fortunate enough to stumble upon a blog where people described their symptoms. While reading this as well as some of the "text book" symptoms I decided to try going gluten free to see if I noticed a difference. YES!!! Yes I have noticed a difference! My hands have been better, I can smell (weird I know), I don't feel like I need 15 hrs of sleep to function, I can think clearly, I have noticed my thinning/balding areas are not as noticeable (I am a 25 year old woman-I was very concerned). Constipation/Diarrhea I am still having problems with but have definitely noticed a correlation with what I eat. I also think I have issues with dairy, corn, and xanthan gum. When I eat dairy and corn my stomach is displeased to say the least. The xanthan gum makes me light headed, confused, my heart race, and very fatigued.

 

 I told the allergist that I have gone gluten-free (at that time it was about one month). He told me he is glad I am feeling better but suggests that I retest. In order to retest I need to eat gluten for one month. I really do feel that with my symptoms as well as my family history (dad-thyroid, mom-migraines, brother-digestive issues) that I...my family (more so brother and mother) could be celiac or at least have a sensitivity.( I have told them to get tested or at least try to go gluten free-they have not) However, I am in a position now where I need to continue gluten-free or go back to what I have started to consider a poison to get tested and hopefully get diagnosed...or not. From my understanding it is really hard to get a diagnosis. 

 

I am at a point where I am not sure if it is all in my head, if I am just crazy. Don't I need a doctor to tell me there is something wrong? When someone asks why can't I have gluten, " do you have celiac disease?". Uhh... I don't know. Even my own mother who has tons of true food allergies thinks I am going overboard being worried about contamination. 

 

My question is: Is it worth it to suffer for a month or more to get a blood test that may not be enough of a positive to get a straight answer? How important is diagnosis?

 

Thank you to anyone who reads my novel of a post, and Double thank you smiley face to anyone who responds. Any input is more than appreciated.  

I suggest that you get tested! You might even need longer than a month of eating gluten:/ I did it too, for a month, all for a negative endoscopy!... But I think that if you dont get tested now, you will wonder the rest of your life. And the longer you go gluten free, the harder it will be to eat gluten and get tested. I know, it's hell... and you want to continue to feel better, but one month is nothing... Because then youll have your answer for the rest of your life! Also, I would get it just to prove it to your mom My mom has a hard time believing me as well.... AND if you end up testing positive, your family members are more likely to take it seriously and get tested or try the diet.

So, I believe that you should... One month goes by fast I remember the first day I scheduled my endoscopy, I didn't think I would make it a whole month! Lol. And now it seems like I just scheduled it yesterday.

Good luck

I ask this because whatever is wrong with me is certainly systematic.  

From head to toe things have been going wrong.

Some examples :-

White foamy saliva

teeth yellowing, and gums receding

Back and shoulder pain.

cold hands.

Upper stomach pain

Strange BM's.

Urination off colour, foamy.

Easy Bruising.

Fatigue.

Tight calves, leg pain.

Dry Burning feet.

Facial/Body hair is not growing as fast as usual.

Thinning hair.

Sinus and ear problems.

 

Plus many more

Can anyone relate?

Yes.

I have:

weight gain

iron deficiency anemia

depression

anxiety

fertility issues

fatigue

muscle fatigue/aches

irregular BM

GERD

stomach pains

bloating

and a whole lot of other things.. It effects EVERYTHING IMO

I had a positive ttg and then had a biopsy. I was told on the phone that I had a negative biopsy and then when I looked at the pathology report WEEKS later it said I had slight gerd and an increase in intraepithilial lymphocytes and that a full celiac panel was needed to truly exclude celiac disease. (My first doctor was awful) Then, my celiac panel was positive for 3 things and I was diagnosed by someone new! My villi damage was missed in my biopsy. You should ask to see your pathology report, that's always a good idea!

What parts of the panel did you have done previously? I'm so sorry they won't run everything- doctors can be so annoying.

You could have NCGI, but you could still consider getting the whole panel. Because if I hadn't, I wouldn't know that I have celiac!

Good luck with your health and I hope you get answers as soon as possible!

Kristin

Yuppp.. Thats why I want to get tested again! And I don't even know which tests they ran... I think only the A ones... lol.

I know, now if THESE tests show negative for celiac, I will believe it is ruled out, and that I have NCGI. Which I plan to eat gluten free for the rest of my life anyways, so thats why I am so stressed! I want to be able to feel better already, but these doctors arnt helping much!

Thanks

Have you been loosing weight?  I eat more than enough and loose weight, as you can see off my pic I was quite well built, but now my muscles have gone and I just have a sticking out gut.

Has for tests I have just had a Celiac blood test (Not sure what the tested for, and also an Endoscopy with no biopsy).  Not sure what other tests you can get, I think it is just blood and biopsy.

Ok thanks!

And nope.. Actually, I gain weight when I eat gluten.. But when I stop eating it I can drop 5 pounds within a week, and that week I ate glouten free cookies and other junk. So it's not just the healthy food making me lose!