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Finally Someone Who Listened

Brittany2

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Brittany2 Apprentice
Brittany2
Posted

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!

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amberlynn Contributor
amberlynn
Posted

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 Newbie
NurseJo98
Posted

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 Enthusiast
Ahorsesoul
Posted

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 Veteran
GFinDC
Posted

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 Newbie
NurseJo98
Posted

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 Veteran
GFinDC
Posted

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.

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Brittany2 Apprentice
Brittany2
Posted
  • Author

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 Apprentice
Brittany2
Posted
  • Author

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 Veteran
GFinDC
Posted

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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    • trents
      I think a UTI caused by Aspirin, made me a Celiac

      By trents · Posted

      Welcome to the forum, @jimmydee! Celiac disease is an autoimmune disorder, meaning the consumption of gluten triggers a response by the immune system that causes the body to attack it's own tissue. Celiac disease has a genetic base that requires some kind of trigger for the genes to be turned on. We know that there are two primary genes responsible for providing the potential to develop celiac disease and we know that about 40% of the population carries one or both of these genes. However, only about 1% of the population actually develops celiac disease. So, that tells us that something more than just having the genes is necessary in order to develop celiac disease. Something must trigger those genes to wake up and produce the active disease. It's that "something" that we are struggling to understand and that is somewhat of a mystery. But there is a growing body of evidence pointing to the culprit being a disruption of the proper balance of microorganisms in the gut. Apparently, the microorganisms that live in our intestines produce chemicals that regulate the size of the openings in the mucous lining of our small bowel. A disruption in the healthy balance of this microorganic community causes an increase in the size of the openings in the mucous lining. This in turn allows protein fragments from the food we eat that are larger than normal to invade the mucous lining where they are detected as threats by the immune system. This is what is happening with gluten for those with celiac disease. The attack in the mucous lining of the small bowel by the immune system on these incompletely broken down gluten components causes inflammation and, over time, as we continue to consume gluten, it damages the mucosal lining of the small bowel which results in the loss of efficiency of nutrient absorption. This mucosal lining is made up of millions of tiny finger like projections that create an enormous surface area for the absorption of nutrients when healthy. The "wearing down" of these millions of finger-like projections due to celiac inflammation greatly reduces the surface area and thus the ability to absorb nutrients. This in turn typically results in numerous health issues that have a nutrient deficiency base. But the answer to the question of why there seems to be an epidemic of celiac disease in recent years may not be simple. It may have many facets. First, we don't know how much of this epidemic is real and how much is apparent. That is, how much of what we perceive of as a dramatic increase in the incidence of celiac disease is simply due to greater awareness and better detection methods? Celiac disease is not new. There is evidence from ancient writings that people suffered from it back then but they did not have a name for it. And it wasn't until WW2 that gluten was identified as the cause of celiac disease. Current thinking on what is causing imbalance in gut biology has put forth a number of causes including overuse of antibiotics and pesticides, environmental toxins, fluoridation of drinking water, preoccupation with hygiene and sanitation, and the western diet. https://www.celiac.com/celiac-disease/theories-on-the-growing-prevalence-of-celiac-disease-and-gluten-sensitivity-over-the-last-half-century-video-r6716/?tab=comments#comment-25345 All this to say that I doubt your UTI or the low dose aspirin had anything to do with the onset of your celiac disease. It was probably just coincidence unless the UTI was the stress trigger that activated the celiac potential genes. The onset of celiac disease an happen at any stage of life and many people report it following a period of illness. But what is interesting about your low dose aspirin theory is that aspirin is in a class of medications known as NSAIDs (Non Steroidal Anti Inflammatory Drugs). Scientific studies have shown that long term use of NSAIDs can damage the villous lining of the small bowel in the same way as celiac disease.  The other thing I wish to point out is that unless you have actual testing done for celiac disease, you can't be sure if you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). They share many of the same symptoms, the difference being that NCGS doesn't damage the lining of the small bowel. There is no test for NCGS, celiac disease must first be ruled out. NCGS is 10x more common than celiac disease. The antidote for both is a gluten free diet.
    • julie falco
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      By julie falco · Posted

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    • jimmydee
      I think a UTI caused by Aspirin, made me a Celiac

      By jimmydee · Posted

      Let me start by saying that I am self- diagnosed Celiac. I didn't want to pay for tests, because I don't have health insurance and the doctor said I would HAVE to eat gluten for the tests and I am afraid it will kill me. I diagnosed myself by quitting dairy, sugar and gluten for a couple weeks and figured out the problem by process of elimination.  ANYWAYS.......here's why I blame "Aspirin low dose safety coated" for my Celiac Disease.  I started taking regular Aspirin for a couple weeks for back pain and decided to switch to low dose safety coated Aspirin because I thought a smaller dose was safer for regular use. Well about 3 days after starting low dose safety coated aspirin, I got a terrible UTI. I didn't know what to do (should have gone to doctor) I started taking cranberry pills and read Aspirin can cause UTIs, so stopped taking that. A week later, the UTI was getting worse but then my Dad gave me some probiotic pills and the next day I felt better, so I took those for a week and the UTI was gone. About a week later, I bought my family cake and pizza for a birthday party. I ate a whole bunch and there was some leftover the next day, so I ate a bunch again. Welp, that was my first Gluten attack. I was home alone and almost called an ambulance, my stomach was so full of gas I couldn't breathe, I was covered in sweat and thought I was having a heart attack.  Since quitting Gluten I haven't had the "gas attacks" or had the awful constipation that lasts 3 days. So I'm certain I'm Celiac and I absolutely blame low dose safety coated Aspirin, I think it's the time release binder that is the problem, because I was fine with regular aspirin, I was just breaking those into halves or quarters. Actually now that I think about it I may have even used the regular aspirin at other times in my life before that, just not the little low dose safety coated Aspirin, that's what I think caused it. What's weird is my Dad took the low dose safety coated Aspirin for years and years, for it's reported heart benefits, and he never got Celiac.  Anyways, I felt this was important to share, so they can find the cause of this disease, which seems to be affecting more people than ever before. At least Gluten Free Pizza exists, that's been my new staple food in my diet.         
    • knitty kitty
      Getting rid of the belly bloat

      By knitty kitty · Posted

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    • knitty kitty
      Dangerously underweight, Perfect gluten free and insomnia

      By knitty kitty · Posted

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