Scared And Nervous....

[sprklechica07]

Hi there! So I am on here, because after 11 weeks of debilitating pain and multiple shoulder shrugs by doctors, my GI finally suggested Celiac disease. I had no idea what it was, but after reading various posts it sounds like me.

I have had stomach problems my entire life. I used to throw up stomach acid regularly and get terrible stomach pains. I also am very bloated and it did not seem to fit a pattern as far as what I was eating. I was diagnosed and treated for GERD and Gastritis for years, but it never added up why I rarely experienced heartburn, and during both endoscopies I've had over the past two years there was minimal gastritis shown.

This summer bizarre things started happening. I had been used to my GI problems, and wrote those off as normal. In June, I developed a large canker sore on my tonsil. I have been prone to cancer sores but this was about the size of a quarter. During this I was training for a Triathlon, so I was eating QUITE a bit of carbs/gluten thinking that I was doing myself a favor. A week before my 2nd triathlon I woke up in the middle of the night with what felt like a heart attack. Later I found out this terrible chest pain I had been experiencing for days was a very bad case of esphogatus. This again was just attached to my GERD problem and I was told to take my exercise down a notch. I've also had 4 cavities in the span of a year (which is unheard of for me!).

In December I started to becoming very sick. I seemed to have the flu all the time. It all started with a bizzarre skin rash on my chest that I though was fifths disease. I am an elementary school teacher but I was sick more than I had ever been before. Between December and mid January I had the "flu" 3 times and a sinus infection. The last time I got the flu I never seemed to get better. My stomach hurt all the time and I was constantly nauseated. This lasted a few weeks, when a migraine hit that I could not get rid of. All my scans came back fine, but I had this migraine for 6 days straight. My speech went out and I was constantly disoriented. Then the body pain began. My body started spasming uncontrollably and there was nothing I could do to stop it. None of my doctors new what to do with me. The hospital had no answers. My blood tests seemed to all come back fairly normal with the exception of that I was vitamin D deficient, my C reactive protien was elevated and I had hypothyrodism. For 5 weeks I was told I had a virus and to "cope". During this timI tried everything, every doctor and no one knew what to do. One day I woke up with a terrible stomachache and ended up the ER. I was violently sick and in tremendous pain yet all my vital organs were fine so they sent me home with Vicodin and called it a day. They finally dignosed me with fibromylagia and told me to cut back the stress in my life and this would all go away.

I knew I was sick, and that is when I saw my GI who after 2 years of treating me, finally suggested Celiac disease. I have been doing my research and it seems to be the ONLY dx that has been proposed that makes sense to me. Here is where I become scared. I should get my blood test back tomorrow or Wednesday, and I am scared for both. 1. if I have it, I have no idea how to go gluten-free and I am worried about that. A LOT. 2. If the blood test comes back negative, what do I do? Do I try for an endoscopy even though I had one less than a month ago? He did not biopsy then so it would be for a different reason. Or do I just try to give up gluten?

I don't know what to do. It's been a rough few months, and the past 11 weeks have been hell. I have gone from a healthy 24 year old who competed in triathlons to walking with a cane due to debilitating pain. I am feeling defeated.

[MsCurious]

I have no idea how to go gluten-free and I am worried about that. A LOT. 2. If the blood test comes back negative, what do I do? Do I try for an endoscopy even though I had one less than a month ago? He did not biopsy then so it would be for a different reason. Or do I just try to give up gluten?

I don't know what to do. It's been a rough few months, and the past 11 weeks have been hell. I have gone from a healthy 24 year old who competed in triathlons to walking with a cane due to debilitating pain. I am feeling defeated.

Hi sprklechica07,

First off... welcome to the forums. Secondly, you have showed up here like probably 98% of us... terrified, or frustrated, or confused, or scared, or all of the above, and THAT is completely normal.

I would say this... fear is compounded by the unknown, so I would suggest reading as much as you need to, so that you understand as much as makes you feel comfortable. There are some really good books out there, and the people on these forums are FABULOUS resources for information, as well as amazing moral support! I can't say enough good about them! (And you all know who you are... YES, I mean YOU! )

Having said that, I would ask you if you feel confident in your GI? (If no... find a good GI that you trust.) If yes, have them run a FULL celiac panel...which isn't always easy to do. I have had one test at a time since January... BUT I noticed you said your blood test (singular)... and as you probably have read, many come back false negative... so a few is better. There are also some people who are IGA Deficient, and that can mess up your blood test results if you're one of them. If it comes back negative, ask for more blood tests.

I was considering just saying "screw these idiot doctors" and going gluten free on my own... until I did some serious thinking after reading "Celiac Disease A Hidden Epidemic" by Dr Peter Greene. That one really made me think twice about trying to diagnose myself, and its a good thing I didn't. I have an endo biopsy scheduled for mid April, but my GI is also running a bunch of other tests ... and thinks I might have some thyroid issues too. I wouldn't have known that. There are other related issues with celiac disease that you might miss, if you don't get a professional diagnosis. That's just my opinion. Get it diagnosed if you can. If you can't (as some people here have not been able to do) then consider going gluten-free if you feel it might help, and you will get an answer from your body. Its just that celiac disease can have other things going on that need to be treated aside from just going gluten free. Hope you get the answers you're looking for, and that you feel better soon!

As far as not knowing how to go gluten-free... again, the people here are a great source of help and encouragement! They will give you links and resources that will make it much easier! Like I said they are great! Again, welcome and hope you have good results real soon! And keep eating gluten if you're going to get the biopsy...which I would recommend talking to your doctor about ASAP!

[RebeccaLynn]

I feel the same way as well. I have had a terrible year & a half with my body completely out of control, and I am only 31. I finally discovered I have a gluten intolerance last October, and am feeling much better, though I still have the flu/colds all the time, and am very fatigued. I went to my doctor last Fall & he did blood tests that all came back negative. I have yet to go to a GI as I have no insurance at the moment and am dreading the costs. Also, I have been gluten-free for 5 months and will never go back on gluten long enough to get tested - stupid, I know, but I have had enough nights curled on the bathroom floor in agony for one lifetime.

Good news is, it might be a relief for you to have Celiac (crazy as that sounds), because it is SO treatable by just avoiding gluten. Not many other diseases have that easy of a fix. Living gluten free is NOT that bad - sure, I went through the stages of grief at the beginning, but am finally getting into the swing of gluten-free living. There are lots of blogs, books & these forums that are so helpful.

Here's hoping you find out the answers to your questions!

Cheers!

Though I am a noob to these forums and gluten free living, I have been so excited to "meet" other people who completely understand what it is like to live this way.

[MsCurious]

There are lots of blogs, books & these forums that are so helpful.

Here's hoping you find out the answers to your questions!

Cheers!

Though I am a noob to these forums and gluten free living, I have been so excited to "meet" other people who completely understand what it is like to live this way.

I have nothing to add... RebeccaLynn .... other than... YOUR PICTURE MAKES ME DIZZY!!!!!!! LOL

[mommida]

There is a list of disorders that can cause these symptoms.

Celiac Disease

Gluten intolerance

H. Ploryi

Eosinophilic Esophagitus (or Eosinophils any where in the GI track)

parasites

Lyme Disease

a Hernia

abdominal migraine

have you checked the adrenal function?

the list goes on....

The point is some of the "usual suspects" here can be healed with antibiotics or medications. Try working with a gastro. to be diagnosed correctly. Going gluten free before testing could be removing the "trigger" for Celiac, gluten intolerance, and Eosinophilic disorders.

How was the Esophagitus diagnosed? If you were scoped, do you have pictures or notes? The spot on your tonsils, was it creamy colored?