Possible Ncgs?

[Maddi]

Hello,

I have a lot of symptoms (headaches, dry skin, anxiety/depressionfor the first time in my life, leg pain/arm pain, tingling in my arms/legs, tummy aches, gases, hair loss, brittle nails, bloating, weight loss, fatigue, dizziness, shortness of breath, acid reflux with esophageal spasms for the FIRST time in my life) that started suddenly 4 months ago. I've taken multivitamins and single vitamins and we'll all my blood work has come back perfect except for my vitamin d is a little low. I'm so disappointed in my doctors who think this is all anxiety/depression when I've NEVER suffered from any of that. And I'm eating quite a bit and I'm losing weight. My stools are full of undigested food (so sry if tmi). I'm 26years old and I feel like I'm on the verge of death. I was tested for Celiac in Feb but my symptoms didn't start until April... idk if that makes a difference. I recently toOK a trip to Miami and was eating 8 slices of bread a day and I felt like complete crap...even worse than now. Well I started thinking that maybe this is a problem I'm having with gluten..

Could this really be the solution to my problems? I'm trying to eat gluten free but this weekend I went out of town and ate at a restaurant and I felt sooooooo bad.): I didn't have bread though. I had grilled salmon, rice with corn, and kale with sesame seeds. For the appetizer I had fries with blue cheese and some of my boyfriend's sweet potato fries. Then on Monday night I did have some rice krispies....but they weren't gluten free I just figured they were bc they are made out of rice? Could this be why I came back feeling horrible? Plz help . I'm so desperate and depressed.

[mamaw]

I suggest you make a new apt  for a doctor  eat  gluten for  several months  & be  properly tested...

[supermaltese]

I can't believe you were diagnosed with Celiac's Disease and did not cut gluten from your diet?!?!? You should make every effort to do this ASAP. Regardless of what symptoms you notice, gluten causes the gut to inflame, which can lead to infection and death.  Additionally, the gut-flora being way out of whack puts you at high risk for other things too, and no one should take unnecessary risks.

[Maddi]

Nooo you misunderstood me. I was tested for Celiac in February but tested negative. Buthe my symptoms didn't start until April so I don't know if that would make a difference or if I'm DEFINITELY don't have celiac disease. If I do have just a sensitivity though could it cause all of my symptoms? I do have a problem with casein (have had issues since last summer so I've eliminated milk from my diet and now I'm also reacting to cheese...I didn't react before) soooo now could I be reacting really really negatively to gluten? I just started my gluten free diet a few days ago...but like I said I ate at a restaurant this weekend and felt HORRIBLE afterwards... I didn't order anything that has gluten (to my knowledge). Soo.... suggestions please? /:

[mamaw]

again  you need to be tested  again  after the gluten trial.....

[Maddi]

Thank you for the response but at this point my doctors say I just have anxiety and I'm afraid they aren't taking me seriously. ): I went my gastro last Friday and he says he tested me in Feb so I definitely don't have Celiac. And my pcp says my problems are all just anxiety. /: but I know that it's not. Like I said I've never been an anxious person. Ando I tell them okay what about my weight loss? And they say I just need to eat more. ..but I am eating. ): I'm so frustrated.

[mamaw]

so find  another doctor

[cyclinglady]

Can you post the test results? Most, doctors just check for an Iga deficiency and run a TTG IGA test for celiac screening instead of the entire celiac panel.

[cyclinglady]

If you have not been an anxious person in the past, have someone go with you to your doctor's appointments. My husband went to several of mine and told the doctors that I was seriously sick and it was not "all in my head". Turns out I had a non-functioning gallbladder that was never caught until it started to rot.

[Maddi]

My dad thinks it's anxiety too . .so does my boyfriend. /: Here were my test results in February 5:

Immunoglobulin A: 250.0 mg/dL

Reference Range: 91-414 mg/dL

Deamidated Gliadin Abs IgA: 4 Units

Reference Range: 0-19 Units

Deamidated Gliadin Abs, IgG: 2 Units

Reference Range: 0-19 Units

t-Transglutaminase (tTG) IgA: <2 U/mL

Reference Range: 0-3

t-Transglutaminase (tTG) IgG: <2 U/mL

Reference Range: 0-5

[kareng]

My dad thinks it's anxiety too . .so does my boyfriend. /: Here were my test results in February 5:

 

 

 

Maybe it is? Maybe it is something else. 

 

But - if you did not have any symptoms of Celiac, why would they test you?  I bet you had some.  And I am a bit confused - were you already mostly gluten free when you had the Celiac tests?

 

And in your first post, you listed things you ate -  No. those foods - fries, salmon coated with who knows what, etc are probably not gluten free enough for a Celiac.

[Maddi]

You're right I was having digestive issues which they kept saying it's just IBS but nothing like what I have now. During that time I wasn't really eating bread and I was eating healthy (no cereal either bc well I can't drink milk) .. so I wasn't super careful or I wasn't trying to be gluten free I was just mostly gluten free. But then my mom kept nagging about how I have to eat more variety so I started eating whole grain bread. And then I went to a restaurant with my bf and had fries and fried alligator as the appetizer (I know weird lol but we were trying something different...it was breaded) and then that weekend I also had Starbucks panini and then BOOM the next day I had SEVERE ANXIETY for the first time in my life. ): it felt like a rush of adrenaline shooting through my body and they ran blood tests for b12 and iron and zinc...well everything came back normal.

And now they've just given up it seems like. And they say it's just anxiety and depression and IBS. There's no way I can believe that. I have major bone/joint pain. ..my hair is falling off like crazy and not growing back fast enough. I KNOW there's something wrong with me. I feel a bit better since laying off so much bread (I'm addicted to bread... lol always have been) but I'm not 100% fine. I'm 5'2 and I'm weighing 96lbs!!!! My normal weight is 10 lbs heavier!!!! At the hospital I was asked if I was anorexic?!! I'm seriously beyond depressed. I'm eating fine with fruits/veggies and chicken, salmon, or beef and potatoes and rice with beans. When I was out of town I was eating ALOTTTTT throughout the entire day and I think I only gained maybe 1 pound (I was away for almost 3weeks). And I was in what seemed like a haze I was SO CONFUSED. Get this. I went to the hospital bc I felt so sick...and they asked me for a urine sample I felt SO OUT OF IT that I went to the bathroom wiped with that wet towelette they give you and started to urinate... and I FORGOT to urinate in the cup!! I got out of the bathroom and thought omg what's wrong with me... I was like what am I going to say to the nurse now? I was honest and she didn't even believe me she's like how are you going to forget that? ): And my most disturbing find is that my stools are soo huge with so much food in them! I know I'm not absorbing my nutrients ...this all started around the same time! (April) Should I go back to eating gluten and find a new doctor? I haven't been off for more than a few days since at the restaurant something made me feel sick and last Thursday first official day off gluten. Thanks again you guys. This forum is pretty amazing.

One last thing I'm off vitamins now and have been for over 1 month bc I NEED someone to take me seriously so it won't skew my tests and I just had blood work done for a physical yesterday so maybe they'll find something? My Ferrantin last time was 20 and the range starts at 15 so it was on the lower range. Not that I want to have anemia but I just want them to take me seriously.): My hemoglobin was perfect though at 14.5 .

Sorry if this is so long.

[squirmingitch]

I say find a new doctor, start eating gluten again & keep it up for at least 2 months, preferably 3 & then go to the new doc. There is too much pointing to you being celiac. 

[cyclinglady]

Your posting is not too long!

Most of us did struggle with anxiety in some form when we were first diagnosed. Even though anemia was pretty much my only symptom, I did have anxiety that I blamed on menopause (night sweats, insomnia, hot flashes, 30 day periods) which was happening concurrently with my Hashi's and celiac disease. I guess I am trying to tell you that doctors and some family just thought it was all in my head and that I should just tough it out! I am here to say that you are not crazy! Is it celiac disease? I can't make that diagnosis because I am not a doctor and this is the internet! Sounds like you were very gluten light leading up to the celiac disease blood test. If that is the case a new doctor and getting retested is in order. But you have to be consuming gluten daily. So, you need to do more research regarding the length of time, etc. Anyone else in your family with autoimmune diseases?

Do some research. Knowledge is power! Make a family history chart of illnesses. List all your symptoms and history and present logically to your new doctor. Everything you contribute can help your doctor make a diagnosis. Buddy up with someone who will support you. And if the Anxiety is severe, you might consider medication. It has helped others on this forum. Finding the root cause would be even better!

Got to go! Band camp is starting....

[Maddi]

Squirmingitch: This is going to be so hard especially with the anxiety and depression it seems to give me. But I know I'm not the only one who has gone back to gluten to hace the test done so I'll try to suck it up. How much gluten a day should I eat?

Cyclinglady: You are too kind!! There's nothing worse than feeling so sick and having doctors and family members think that you're crazy. Sigh I bet in a way (even though having Celiac is not a walk in the park) you felt relieved to finally get a diagnosis so that you could start a diet to feel better. At this point I'm willing to try anything to just get them to take me seriously and have them find what's wrong with me. The only thing that runs in my dad's family is thyroid disease almost every woman in that family includidng his mom has hypothyroid. Yes, I've been checked recently and my numbers were perfect (at some point I thought maybe that would be the answer to my problems). My mom's family just has heart problems but with old age. I've had work up for thyroid, diabetes, arthritis, ova and parasites, and so much blood work that I have no idea how I'm not anemic by now!!!! lol

My digestive problems started 2years ago when I was out of the country and got what they call traveller's diarrhea it was quite severe. Well since then I've been treated with SO MANY antibiotics that I know my gut flora is ruined. Probably about 15antibiotics in the past 2years. Up until I was 24 I never got sick and I could eat anything and everything. After I got sick I was left weak and no one instructed me to take vitamins well..I kept getting sick. With infections things I never had gotten before. But my digestive system wasn't even that bad. Fast forward to November of last year I started getting nauseous but I went to acupuncture and it made my nausea go away! And reduced my frequency of going to the bathroom. I never quite believed my is diagnosis of IBS bc I didn't have you know diarrhea, diarrhea just frequency and I didn't even really have any pain. Well now I'm having intolerances to certain foods it seems like so I'm really thinking that I'm having a problem with something that I'm eating. I just want to get better and having a diagnosis would help me do what I need to do to feel normal again. I'd be more than okay with feeling at least 75% normal be cause right now I'm more like 40%. I'm going to find a new doctor after I get the results of my physical (my dr said she'd check my thyroid again which I didn't ask for but it was nice of her to recheck and also my liver and kidney function and some vitamins!) So hopefully they find something. Also.... they did a gallbladder scan almost a year ago and they found that my liver was slightly fatty?? Which was strange bc my cholesterol has always been fine and I'm super thin. So we'll see my liver function results and I'll keep you guys updated!

[Maddi]

I had emailed the restaurant at the hotel I stayed in this weekend and this is what they replied:

Thank you visiting our restaurant. We strive to help anyone with allergies and/or any types of food concerns. I have several friends that can not consume Gluten and I have learned a lot from them. Blue Cheese has been a concern of dietitians for years. In some blue cheese the spores used to make blue cheese “mold” has been said to be grown by using bread yeast. With that said most of Celiac patients stay away from any blue cheese products. Our recipe for Blue cheese fondue does not have flour in it and we use a good quality blue cheese. The unfortunate thing about the blue cheese we use is that it doesn’t state on the package “Gluten Free” so I can only assume it has gluten of some sort in it due to the spores. In regards to our hand cut french fries, We do not specify a fryer just for Gluten free. So at some point the grease would have had fried oysters or fried chicken in it.

I understand the importance of food transparency and the growing need for food knowledge in restaurants. We are always willing to help consumers with food allergies. I hope this helps with your concerns. If you need anything else please do not hesitate to email me.

So...that could explain my bad dizziness after my meal and my headache. I'm going to definitely find a new doctor and I'm going to push for Celiac testing. This cant be a coincidence. How long after being gluttened can you tell? Bc honestly I ate the blue cheese and about 30mins to an hour later I started getting palpitations and a headache. Then I continued eating my main course and I was very dizzy when I was done and was walking around. The next day I continued with the headache and had a stomach ache and was fatigued. And I'm still fatigued. Ughh

[squirmingitch]

The Chicago Celiac Disease Center recommends 1/2 slice of bread per day for 12 weeks for the challenge. Sorry. Some find it easier to eat that before going to bed so hopefully by morning you won't feel quite as bad as if you ate it during your waking hours.

[squirmingitch]

BTW, my primary care doc wanted to put me on antidepressants --- jumped up & down with joy at the notion of dispensing antidepressants. 

GI doc blamed everything including my severe bloat on menopause. 

Anxiety? Like you I never had anxiety in my whole life but I did for several years before diagnosis. Depression? I had never had the slightest depression in my life except starting a few years before diagnosis. I am 58 now & have been gluten-free for 3.5 years.

[Maddi]

WOW my doctor keeps pushing Xanax and Lexapro at me but I've refused for now. I just saw her yesterday and she thinks it's really just anxiety causing my weight loss. I'm like WHAT?! Sorry but if I'm eating that makes zero sense. I haven't even lost my appetite! I feel so bad for the people who genuinely feel bad and the doctors don't listen so they just give in to taking drugs without finding the cause of their symptoms! I am a pretty hard headed person so I've been pushing and pushing but even yesterday I broke down and I cried and cried thinking okay maybe it is only anxiety but in my heart I know that's only a secondary problem to something else. Theres no way you can blame ALL of my symptoms on anxiety when I don't even have anxious thoughts!!!! Have I spent most of the past few months just researching trying to find a cause to my problems? Yes. Do I spend a lot of time on Google? Yes. But only bc I feel so sick and doctors won't listen to me so I'm hoping I can find the solution to my problems MYSELF. I know it happens ALL THE TIME like you said you suffered FOR YEARS. I'm so sorry. Being miserable for years is something no one should have to go through especially if it's something that can easily be changed with a strict diet. I'm determined to find the cause to my afflictions. I really do appreciate having somewhere to talk to people that are also going through or have gone through hell and back trying to get a diagnosis... it really does give me hope. (:

One last thing I've noticed is chicken skin bumps on my arms/thighs/legs where I keep cutting myself when I shave! Could this be related to gluten? It started 4 months ago too.

[squirmingitch]

Possibly. Celiacs tend to be prone to skin issues of all sorts.

 

How many celiacs on here past & present were told "it's all in your head"? I can't count the number. Or if they're skinny were told to eat some cake or if they're fat were told to quit stuffing twinkies down their throat? How many who were fat were told they couldn't possibly have celiac b/c they are fat? How many who are skinny were accused of bulimia or anorexia? How many were handed xanax or valium or such? How many were handed antidepressants? Or both? How many with celiac rash were accused of self mutilation? How many were told they could not possibly have celiac because it's a rare disease? How many were told it's only a childhood disease? How many were at death's door?

 

When you find a new doc make SURE he/she orders the FULL celiac blood panel. Don't just take their word for it - tell them you want to SEE the order & read it for yourself. Here is the full panel:

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA

The DGP test was added recently to the full panel.

Also can be termed this way:

Endomysial Antibody IgA
Tissue Transglutaminase IgA
GLIADIN IgG
GLIADIN IgA
Total Serum IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG

[Maddi]

So sad how quickly doctors dismiss our symptoms as if we're lying or exaggerating. They're supposed to do no harm but by not looking further they could be doing a lot of harm to a lot of people. I didn't go to medical school and I'm not a doctor BUT a doctor can't tell me they know more about me than I know about me. They loveeee to hand out antibiotics and anti anxiety meds as if they're candy. That's how I can tell a doctor REALLY cares about his patients. My old pcp loves antibiotics but he always said that he would rather his patients try handling anxiety with diet and exercise. He wasn't as quick to hand them out. They act like they don't know how addictive they can be. Since getting more and more sick I'm left very disappointed in doctors. Not all are the same but the good ones can be very hard to find. That's why they come up with these diagnoses of fibromyalgia and ibs bc they don't look any further they don't think outside the box. Sorry about the rant I'm just tired.

Moving on, I willlll be requesting each and every one of those tests while eating gluten for a few weeks. I've been on gluten months (and quite heavily I might add until I've gone down a few days ago) so I don't think I neeeed to do more than maybe 2weeks. Thoughts? Or am I completely wrong about this? I'm craving donuts so I will buy a two on Friday (one for me and one for my bf) that's when I start introducing gluten (after the blood work for my physical results they took yesterday). I have so many questions! I guess I should get tested first before I make any assumptions on me having celiac or a gluten sensitivity. It's so hard to do!

[cyclinglady]

Ask for thyroid antibody tests. That will rule out autoimmine thyroiditis which seems to run in your family. TPO antibodies can run high yet your TSH and other thyroid tests may be normal. That is what happened to me.

[Maddi]

My doctor won't run antibodies test unless my tsh/t4/t3 are abnormal. I asked when I was trying to rule out thyroid disease. She said you don't want to take thyroid meds unless you need them uuuhh no crap... seriously? They ran thyroid panel again yesterday. . I get my results by tomorrow or Friday!

[Maddi]

I have a question... I mean granted my most of my severe symptoms started 4 months ago but could you have celiac with normal blood work? As in normal iron, liver tests, cholesterol... everything absolutely normal? No I'm not talking about celiac panel tests just everything else... I guess I'm asking bc all my blood work from my physical came back normal. Yet I'm still underweight.... and I have so many awful symptoms that seem to get worse when I eat certain things. I am going to go get tested for Celiac again I just don't want to make myself believe this is a possibility and then get disappointed (not bc I want to have Celiac but bc I NEED to find the answer to my symptoms). I don't know if this makes sense but I'm so scared of having my Celiac tests come back negative... bc if i don't have it i don't know where else to turn to for answers. At the same time having Celiac sounds awful. ): i just want to go back to feeling like a normal 26 year old. (Today has been a rough day...mentally) Thanks you guys.

[squirmingitch]

Yes, you can have normal blood tests -- CBC etc... & have celiac disease.