Sick Constantly

[Person]

Hello,

I'm hoping someone has a little bit of insight. Until Thursday I had never heard of Celiacs before yet I think the surgeon who intends to take out my gallbladder might be on to something. She mentioned it during the consult and since then I've begun my own research - shockingly if I have Celiacs, multiple problems extending beyond a GI system would be explained.

I've had digestion problems since I was 13/14 however I always attributed those struggles to a past eating disorder (diagnosed Anorexia Nervosa at 13) and wrote it off until April of this year when my symptoms reached the point they were absolutely debilitating. After months of vomiting, daily bouts of diarrhea, fatigue, fevers, severe stomach pains, constant nausea, and migraines my doctor discovers that my gallbladder isn't functioning and refers me to a surgeon. However, the surgeon believes I have a secondary problem that isn't explained by my gallbladder alone. Not to mention the fact my thyroid keeps jumping between hypo & hyper. Apparently, I was diagnosed with hyperthyroid when I was 13 and it was left untreated. (I only recently discovered this.) When I was twenty, my asthma/allergy doctor ran blood tests (I didn't even know she was checking my thyroid) since I'd been getting chronic infections & flus & had to be withdrawn from my semester. (I wound up being hospitalized due to dehydration from vomiting/diarrhea & a high fever.) She told me I was hypothyroid & referred me to a GP who re-ran the tests & they came up normal. So, I took the GP's advice and didn't pursue it further. Over a year later, (and now that I'm told I need to have my gallbladder removed) I'm told I'm slightly hyperthyroid. Only, a few months ago when they ran the blood tests it came up normal. Over the last few months my TSH has plummeted. I am terribly confused as to what's wrong with my thyroid.

Anyhow, my surgeon suggested celiacs disease and told me to try going on a gluten/dairy free diet. (Also, I'm lactose intolerant.) Over the years I've been diagnosed with IBS, food allergies (without skin tests when I was 13), add, adhd, and now my gallbladder is poorly functioning & barely contracting. I read this article about celiacs & gallbladders & it noted that the damage could be reversed. I'm beginning to think a great deal of my health problems is a result of celiacs and not the random numerous disorders I've been previously diagnosed with.

Since this is turning into a ramble the rest of my symptoms are:

- weird mouth sores & blood blisters along the insides of my cheeks

- frequently underweight despite eating like a horse

- food cravings that revolve mostly around sweets, nuts, and doughy-things.

- edemas regardless of my current weight

- swollen tummy while my limbs remain gangley/skinny (except my fingers which seem to swell)

- my whole body aches as though I have the flu especially my joints

Also, when I was a baby I was diagnosed with multiple allergy syndrome after developing severe allergic reactions to multiple antibiotics. Since then, doctors refuse to place me on an antibiotic I've previously been on unless I'm hospitalized. I was also diagnosed with asthma and chronic fatigue when I was 14. . .

AH! Sorry this was so long.

I'm hoping this is the answer. Really. I'm getting so excited that the end is in sight...

[ShayFL]

Your thyroid sounds like Hashimoto's disease which is an autoimmune disease (so is Celiac). And the two are often related. Did they test you for both thyroid antibodies? Call. Find out. If not, those should be tested ASAP!!

You NEED to ask your doctor if he plans on TESTING you for Celiac (full blood panel including IgA and IgG and total IgA) plus a biopsy. If he does, then you DO NOT want to go gluten free until after ALL tests are performed.

Unfortunately a common pattern is that a doctor will tell a patient to "try" a gluten-free diet. The diet works. So then the doctor says....now we should test you, so start eating gluten AGAIN. The patient eats gluten for a few weeks then tests NEG. So the doctor says you do not have Celiac. THIS IS ALL WRONG!!!!!!!!

A patient could do enough healing on a trial of gluten-free diet so that the tests will be NEG when in fact that patient DOES HAVE CELIAC. You MUST be eating gluten and have been eating a lot of it for a good 3 months before Celiac testing or you can get FALSE NEG.

And the consequences of eating gluten when you have active Celiac are dire. Why doctors do this is beyond me.

SOOOOO.....DO NOT let the doctor put you on gluten-free diet BEFORE testing. DO NOT DO IT.

Insist on the tests first.

[Person]

Hey,

Thank you so much for your reply. Unfortunately my gallbladder surgery is scheduled on the 20th and after discovering this website (https://www.celiac.com/articles/119/1/Gall-Bladder-Disease-and-Celiac-Disease---By-Ronald-Hoggan/Page1.html) I'm incredibly reluctant to go through with the surgery - especially since they didn't find a single stone. The reason they want to remove it is because of a CCK injection reading of 24% & poor contractability plus my GI symptoms are worsening. I'm not sure if I am/was eating enough gluten to test positive in the first place. How much does one have to be consuming? Basically, everything seems to make me sick and I found out months ago that unless I steer away from breads/cereals/etc I wind up vomiting. I occasionally eat turkey sandwiches or a bowl of cereal but I have to be extremely careful. Usually I lie down for hours after eating anything. My doctor told me it was the gallbladder. Then again, this is the same doctor who told me last year that 101 wasn't a fever and didn't address my hypothyroid. When I insisted they retest my thyroid this year, he was shocked when it came up hyper - complete polar opposites.

I'm also scared of the ongoing damage to my body. I can't even sit through class the pain is so excruciating and over the last month it's spread from the right to the left side and the only position that alleviates the pain a bit is lying on my stomach. I actually moved my computer monitor to the floor since it was impossible to sit up for an extended period of time. My whole body aches and it's difficult to pick up heavy objects or even function.. I'm only 21! Also, I've had several teeth (front) fall apart for unknown reasons. I can't even enjoy walking/jogging and listening to music my legs & knees hurt so much. I don't know... if this gluten-free thing works I'd stick to it regardless. Is it possible for me to have my parents get tested for the genes instead of eating buttloads of bread for a few months? I really don't think I can go on like this much longer. So far, it seems my gluten sources are vitamin supplements, the weekly bowl of cereal, protein bars, tofu, and the very occasional bagel/sandwich.

Also, my psychiatrist believes I was misdiagnosed with Anorexia when I was 13 since I was an extremely atypical case. What happened was my family and I moved across the country and I became depressed & didn't eat very much for a couple weeks which resulted in a 5 lb weight loss (I was always very small/bordering underweight as a child so even a small weight loss was concerning) and when I started attempting to eat again (mostly hamburgers) I kept getting these horrible stomach aches... and I wound up losing 20 lbs total despite eating (although it wasn't nearly as much as before since I was young and a bit too immature to deal with the pains) and since I was really withdrawn I just accepted when the GP told my mom it was Anorexia. . . When I hit a 12.61 BMI they wanted to hospitalize me but my mom refused and checked me out.

I've literally been eating 2.5-3 thousand calories a day yet barely maintaining an 18.5 BMI. I completely gave up on western medicine and refused to go back to any doctors until recently. When I told my psychiatrist what was going on back in April she stopped treating me for everything except ADD. Strangely, I was afraid until recently to tell her that I have this weird need to eat at least 1/2 a jar of nutbutter a day. When the gallbladder attacks started happening I could no longer eat enough to maintain my weight and it started plummeting again.

The weirdest thing is even at 21, I'm still very underdeveloped. I have the body of a 12/13 year old (which is also when I stopped growing). I've been digging up old records from the Children's Hospital and apparently I came up not only with hyperthyroid but anemic & vitamin B & K deficient. . . but they all insisted it was a result of my Anorexia. I was a homeschool kid and very shy so I let my mom do all the talking. . . and both of us just bought the whole eating disorder diagnosis.

Anyhow, they only tested for T4 & TSH on my last blood test. Back in 2007, I know my allergist did the whole panel (and it came up hypo) but I cannot locate those records for the life of me. I'll keep digging.... or see if I can find her name and call to see if I can have the records sent to me.

[Mtndog]

Oh,you poor thing- it sounds miserable (and unfortunately WAY too familiar). About two years after going gluten-free, I had my gallbladder removed because I was so nauseous and had two small stones. OK- thought that was it. Continued to get worse and finally was diagnosed with Lyme disease and 4 co-infections.

MY ADVICE (opinion) would be to DEFINITELY get tested for celiac (the bloodwork AND biopsy). Regardless of what turns up (more false negatives than positives here), AFTER the testing try going gluten-free and seeing what resolves.

Everything you're describing could be due to celiac malabsorption or thyroid and malabsorption. take EVERY test they are willing to perform (better to rule things out- I had a CT scan, endoscopy, colonoscopy and who knows what else but at least I ruled out everything from cancer to Hepatitis).

Also check out this thread:Open Original Shared Link

or this website:Open Original Shared Link

[ShayFL]

You do not need a doctor's permission to go on a gluten-free diet. So what if you dont get an official dx of Celiac? If the gluten-free diet makes you well.....you have your answer regardless of what type of label you want to call it (Celiac or Gluten Intolerant).

BUT you need to be 100% gluten-free. No Wheat, Rye, Barley or Oats. Check everything. Ask in here if you are uncertain. Call manufacturers to check. Make sure all toiletries like toothpaste lip gloss, creams, etc. are gluten free (anything that can get into your mouth in anyway must be gluten-free). Give it a solid 3 months and see if you dont improve.

If you are Celiac that would explain why you can no longer digest fats.

Genetic testing will not dx Celiac. It is just another piece to the puzzle. If your parents can get tested, then great, they should.

But you can start the diet today and see if you get well.

OR you can eat tons of gluten foods everyday for 3 months and get all of the tests.

[Mtndog]

I agree with ShayFL- it cannot hurt to go gluten free (especially if you want to avoid all that testing!). Start by eating things you know you can tolerate- maybe some rice and gluten-free chicken broth- then add things in every 3 days and see how you do.

Wanting hamburgers and nut butters seems like your body wants protein. If you can't tolerate nut butters you could try sunflower butter later.

I'm sorry you've been through so much. I hope you find some answers here. Let us know how you are doing.

[nora-n]

When my daughter had her second bout with hyper, I suggested she try gluten-free to see if that would stop triggereing the TRAb antibodies. It did, graves just vanished. And her constant stomach aches and D. Doctors would not examine her in the past, because they said that belly aches in children always are nerves...

She then had ot go back on gluten and she did manage to stay six weeks on gluten, had the scope, they saw the small intestines looked abnormal, but the biopsy was supposed to be normal. (they only took two samples, and only looked at one of them)

But she did get a diagnosis of celiac, official diagnosis, because of all the other stuff going on, and because she responded so well on the gluten-free diet.

Get the thyroid antibody tests done, and the celiac tests as soon as possible.

I hope they and you find out of this soon.

nora