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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

My Husband Spent The Last 24 Hrs. In The Hospital
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T-Bird    0

It started with that d*&% orange on Thrus. night. He felt a burn in his stomach right away and the pain only got worse. We made him a doctors appt. first thing Mon. morning, he saw the dr. at 2:15 and his family doctor told him he ulcers, had the nurse give him a shot of dimeral and wheeled him over to the hospital were they ran blood test and did CTs of his adominal area. He was hooked up morphine when he got in the bed and the med. helped with the pain so he slept last night. So this morning the GI dr. comes to see him in the only 45min. that I left so I didn't get to speak to him, all I know is what my husband which is on morhine at the time tells me that he mentioned something about Hepatis and asked he had any tatoos, and said he was concerned about his liver. Again this is what my husband remembers from the conversation which he was pretty out of it when he talked to this dr. Well I asked the nurse and the on call resident dr. about this and they didn't know anything. Oh, by the way I informed them all that he might not be celiac but seems to intolerance to gluten. They dicided to release him since he couldn't get into for the upper GI until Fri. morning. When they started preparing his dischrage paper work and un hooking his IV he started breathing hard, sweeting all over, bad chills, and throwing up. Needless to say the nurses were a little freaked out by this as I was, when they were all working around him and trying to get is IV started back up and said he's not going anywhere for now. He told them he was having a panic attach and that they happen atleast every month or every three months at the most. So they gave him some meds. to calm him down and it was so painful to see him like that in the hospital but I was relieved that it happened in the hospital this time because usually its at home and in the middle of the night. The on call resident of course say it's anxidy(SP) attacks. So know we went from testing for ulcers to finding about these attacks also. I told the nurse and the dr. what I read about all your sysptoms, but they say they aren't related and I just don't believe that. He just turned 40 this past December, is not over weight at all and have in the last month find out that his body isn't making testosterone and has to get injections every 3 weeks. So, what do all you have to say about a young somewhat healthy man, that has had stomach and bowel problems for over 25 years, lack of testosterone in the last 2 yrs.(we think about 2 yrs.), bad stomach burn they only morphine and dimeral helped subside, panic attacks so severe that he throws up, sweats and chills. All I want is for the drs. to find the answers, I'm so scared for him and our little family! Please help with any advise.

Sincerely,

Tabatha

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I'm so sorry to hear you and your husband are going through this. I really don't have any advice except to make sure the doctors address all of your concerns and test him thoroughly.

You mentioned he may not be a celiac. Was he ever tested? If he is having this much trouble with the ulcer, maybe an endoscopy is needed to see what is going on? Research and find the best Gastro to do the work.

Is he eating hospital food? I have never been able to have a truely gluten-free meal show up at my bed in the hospital. I end up bringing my own food. They usually have a patient rfidge on the floor that you could store food in.

Also, if he is released from the hospital with no good solid answers as far as the two of you are concerned, look into alternative healthcare. I found a great kinisiologist/herbalist that I just love. She tested the herbs on me and set up a schedule of what herbs are taken when and I feel much better now. It might help with the testosterone and panic attacks.

Best of luck in finding the source of the problems.

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jerseyangel    409

Hi Tabatha,

I'm so sorry for what your husband and you have been going through. I'm so angry, though, that the doctors aren't seeming to take the possibility of Celiac seriously.

I don't have any firsthand experience with this, but I have read of people here on the board that had thought they had trouble with testosterone--and were happy to report that being gluten-free was a big help in that department.

Hopefully, they will weigh in on that for you soon.

Please take care and keep us posted on your husband. :)

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nikki-uk    28

T-bird,

I'm sorry you're both going through this.

It sounds quite similar as to what happened to my hubby (he was also 40 yrs at the time)

My hubby was admitted and the docs thought it was ulcers - then questioned him about his tattoos (hepatitis?) had ct scans of his abdomen etc.etc (about every test known to man!).

His bloods for celiac disease came back negative.

However his biopsies from his endoscopy came back positive for celiac disease.

My husband also used to 'come over' bad, sweating, chills, throwing up, burning stomach - all of which you've mentioned.

Has your hubby had the bloods for celiac disease? (not that they rule out celiac disease)

At the time we couldn't believe just how very ill celiac disease had made my husband - and it seemed to me the docs were sure it was anything but!!!

As he was so ill it took him about 6months before he felt any improvement after going gluten-free.

I hope you get some answers soon and your hubby feels better soon :)

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DestinyLeah    0

Know that you and your husband have rights as a patient. You have the right to know exactly what tests are being run, the results of said tests immediately upon receipt, the right to request certain tests and be taken seriously (If they refuse the tests, ask why and tell them you want a written statement saying that the exact test you requested was refused, with a reason, a date, contact information, and signatures by the doctor, and the charge nurse as a witness, to be presented to the state nursing board. They will rethink the test, as this could lose them their license if he was later tested positive for the disease you thought it was. They call it negligence.)

You have the right to request a transfer to a new hospital. You have the right to a second opinion. You also have the right to speak with the people in charge of the hospital if you feel that your concerns are not being addressed or that your husband is receiving inadequate care.

( It seems he is) Knowing your rights as a patient is the first step in getting the care you need in the hospital.

By the way- check his diet (they have to tell you what is on file) If you requested a gluten-free diet and the doctor ordered something else, get a transfer ASAP and file against the doctor. If you requested it, with good reason to believe it was in your husband's best interest, and he ordered a different diet that included gluten, he is being negligent and is also endangering your husband because he is not taking your concerns seriously.

Run far, run fast.

PM me if you ever need someone to talk to! Much love, and hope he feels better soon.

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DestinyLeah    0

http://clinicalcenter.nih.gov/participate/...of_rights.shtml

http://www.noah-health.org/en/rights/whatrights/basics.html

Research your rights, but I would still get out of there and to a new doc. To bad you do not live in New Orleans! I have a doctor who would hang the moon for y'all if you did.

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loco_ladi    3

on Oct 2nd of 2005 my husband suddenly developed breathing problems, local doctors were baffled and started stuffing him full of meds, by Oct 31st he could not function, he had all he could do to walk 5 feet because of his breathing issues....local solution was more meds..... larger city nearby solution was more meds..... finally got a referral to National Jewish Clinic in Denver.... he is off all meds and back to better than normal but ask the Dr at NJMC just how (whats the polite word I am looking for...hmmmm) demanding I was upon arrival.... I had more than enough with the medical profession by then and when he came out with "boy your really not doing well, you should go to the emergency room", lets just say his eyes popped open and his jaw hit the floor as I oh so sweetly explained he would find out exactly what was wrong now and he was not just going to ship him off to the ER where they would give him even more pills that didnt work......

Lets just say your momma taught you how to make the B in itch a capital, use it.... stand up for your family and make them stand up and be accountable for everything they do and decide, sometimes its worth it, and the best part is, you get to vent :D

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JerryK    5
I don't have any firsthand experience with this, but I have read of people here on the board that had thought they had trouble with testosterone--and were happy to report that being gluten-free was a big help in that department.

Yes indeed a few years ago, I had the testosterone of an 85 year old man. Numerous trips to doctors and endocrinologists and all they would say was "your levels are normal". Well I knew they weren't normal, because I'd done the research ...(Yes I just managed to squeak into the normal range, but my numbers were what you'd expect for someone who'd been neutered)

Lots of things can cause it....poor diet...too much exercise...too much stress..certain medications, like anti-depressants...being overweight...underweight...

In my case, although nothing is certain...my levels of testosterone went up a bunch whenever I went gluten-free. I didn't actually have blood tests, but it was plainly obvious to me that something was up :P

So...read the fine print of any medications he might be taking....ease back on the stress level..etc and see what happens.

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PainPill    0

I skimmed all the post and everyone of them were concerning. I love this place more than you know and its helped my wife and I know that there is always something new to learn about this crummy body I live in. It could always be worse and I know that for sure. Again thanks for all the support, it really really helps coming from our new cyberfriends that have something in common, which unfortunately is this crazy disease. U never know I might just be a Koo Koo head and need to be committed. Sometimes feel that way :ph34r:

God Bless and wish me luck on Friday.

Karl , Tabatha's loving husband forever.

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loco_ladi    3

Painpill, I will save you a spot on the couch next to me when you get to koo-koo land ;) if nothing else we can keep each other entertained and out of trouble :rolleyes:

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jerseygrl    0

PainPill, I dont have celiac disease, but I sure have had my fair share of panic attacks. :ph34r: The worse thing about these attacks is that it trains you to "fear the fear"

of another attack, which of course, brings on another attack. I tended to have one AFTER something stressful, not in the stress moment itself. Like, finally, after

my body was able to relax, maybe weeks after the end of the stress event, THEN I would have the attack. I found that while having the attack, it helped to

try to get angry, even yell at the "attack"(Yeah, sounds crazy :rolleyes: ) but it really works for me. Been known to swear at "it". *giggling about it now, in hindsight*

What getting angry did was to but ME in control, not the attack.

Anyway good luck Friday. I wish you all the best.

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DestinyLeah    0

Glad you're feeling well enough to reply. Good luck, give 'em hell.

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