Finally Someone Who Listened

[Brittany2]

Hello, I posted a little while ago with some concerning questions. Yet since then I found a doctor in Pittsburgh who is highly educated on Celiac and believes that irritable bowel syndrome is only the symptoms of the many diseases not yet discovered by mankind.

He listened to my symptoms, disregarding the negative blood test saying most times they will be low when it is not full blown serious.

My symptoms have been a pain for awhile now, frequent bowel movement, bloating, abdominal pain, fatigue, as well as low iron count and hair loss. He also mentioned that chipped nails and low dental enamel were present and also strong indications. Apparently clubbed fingers were a sign to look for as well. He also said although most likely not true, those with high foreheads have celiac more commonly.

With all of the signs, he said its enough to investigate and scheduled a biopsy. Now I'm excited but highly nervous at the same time, it'll be great to know positively. Yet, what is there to expect with it, how long does it take from there to find out?

Thanks! Best wishes to all!

[amberlynn]

Congrats on finding a good doc!! That's a great part of the battle, lol. Mine half believe me, but whatever. I don't know ho long it takes to get a test result back, but I hope it gives you some answers!

[NurseJo98]

I am new to this and have my biopsy tomorrow. My blood test came back negative last week and my PCP said that often times, it will be for most. I had gastric bypass surgery 6 years ago, and many symptoms have been attributed to that (severe anemia requiring IV infusions, gas, bloating, diarrhea, lactose intolerance, hair loss). At my last PCP appointment I had mentioned the fact that I cannot have a more than 2 sips of beer before I am numb, bloated, gas, and nauseous. I also mentioned that I have issues after eating most foods (cakes, pies, some breads and fried foods, cheeses, milk products, processed meats). She said "I can't believe that I didn't even think of possible celiac sprue". I am thankful to have the PCP that I have and hope that we are able to find a diagnosis for these symptoms!

(BTW, I'm also in Pittsburgh, so thought it was fitting to respond to your post!)

[Ahorsesoul]

Under a new topic, with Dr in Pittsburgh, PA as the subject post your doctors names so others in your area will know who to call for an appointment.

[GFinDC]

I think it takes from 2 to 3 weeks to get the biopsy results back. They would probably send the samples to a lab for analysis. Biopsies don't always tell the full story. Even if they come back negative it would still be a good idea to try the gluten-free/CF diet for a month or 2. Your own body can tell you if you should be eating gluten or not. If you give it a break from gluten and you get better you have your answer. Your doctor should probably test you for vitamin deficiencies also. Vitamin D, iron, whatever else he can test for would be good. Celiac sometimes causes malabsorbtion of nutrients, so you could be low on some vitamins/minerals.

[NurseJo98]

My labwork just came back with low Vitamin D, Vitamin B12, my iron has always been on the low side. So I will start weekly megadoses of Vitamin D and weekly Vitamin B12 injections. I cannot metabolize oral iron, so when my levels get low enough, I require IV iron infusions.

Brittany Drew - I hope it works out for you!

[GFinDC]

Hi NurseJo,

Welcome to the forum! Sorry, I forgot to say that last time. I was low on Vitamin D also, even when taking multi vitamins. I take a liquid B-12, it's real easy. It is absorbed in the mouth, so it doesn't matter if the gut is not totally healed.

[Brittany2]

Thanks everyone! Crossing my fingers and excited for the results.

It went well today, and really fast. They said there was no visable damage but they did take 6 samples, so I hope it gives a full story. Apparently when I woke up I was demanding to know if he took at least four, and the doctor was saying yes Brittany no worries I took 6 to be safe. I dont remember saying that now though from the sedation.

I'll know for sure in a week. Yet either way, I've decided to try being totally gluten free and see how I feel, I'm sure it'll be an improvement! The good thing is that my primary care doctor checked all of my other nutrients and found I was fine, all except for the low iron. I have been taking extra supplements though, one for teens, being still 19, that gives an over abundant amount of necessary vitamins.

I put a new topic in the doctors forum about who I went to as well!

NurseJo I hope you have your answer soon too! That's nice that you live in Pittsburgh as well.

Thanks GFinDC for your advice, there's no harm in trying the diet now that I've done all of the tests. I'll just be overyjoyed to feel better.

[Brittany2]

Hello!

So I got my biopsy results back today, and apparently there was not signs of damage at all. Honestly I was hoping for very little signs of damage so it would be at least something to diagnose on. Yet I should've known being only 19 and just really starting to notice symptoms the past year and a half. I'm trying the strict gluten free diet to see how I feel on it, and already I'm feeling better especially more energetic during the day. One of my personal care doctors said it might just be latent, but my wonderful Gastro doctor is going to explore the other things it could possibly be, though I really don't know what else. Time will only tell, I'm sticking to the diet and luckily with an awesome family and roommate to help me adjust to it I'll see if all or most of my symptoms go away in a month or later.

I plan on having the genetic test though soon, sadly its rather expensive. I just thought with all of my symptoms and family history it would have been proven true, though no one in my family has been diagnosed with Celiac, (my grandma believed her son was just cant quite remember at this point) there are a couple of auto-immune diseases in my family.

[GFinDC]

Hi Brittany,

I wouldn't be too bothered by the tests not being positive. It could just be you caught it early before there was a lot of damage. That's a good thing! The genetic tests are interesting, but since there are about 30% of the poulation with them, they don't really narrow it down much. Some people here like Enterolab for testing also. They use a stool sample test to detect antibodies. Dr. Kennth Fine has an article about his testing on this site. I think his theory is the antibodies in celiac are produced in the gut so they show up in the stool much sooner than they do in the blood stream. They would show up in the blood stream when some gliaden ( gluten protein), makes its way through the gut lining and into the blood. I think that makes a lot of sense, since the damage in the gut with celiac is due to antibodies attacking the gliaden protein stuck in the intestinal wall, IMHO. Anyway Enterolab does various tests including genetic testing. I posted a link to Enterolabs test pricing page.

You should know there is some controversy on the site about Enterolab. Since it isn't a main stream accepted diagnosis method, it isn't nessecarily helpful if you really want an official diagnosis of celiac. The accepted diagnosis methods seem to be the blood test and a biopsy, which you have already done. Those tests are not perfect though and don't always give 100% accurate results.

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