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hotpinkbubbles0786

New Here, Frustrated, Need Some Answers!

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Hey all, I am new to this website, and have a few questions for you guys. First of all my name is Casey, im 24 years old. I have a lot of medical conditions. I have seizures, migraines, supraventricular tachycardia, blood clotting disorders that are genetic, high blood pressure, history of pulmonary embolism, possible hereditary angioedema. Ive had bowel and digestive problems since I was very young. Back then I used to go through bouts of severe constipation. I got the lap band surgery in 2007 and have been having a lot more problems. To make a long story short I moved and saw a new GI a few weeks ago. At first he told me I had IBS, go home and eat lots of fiber, he scheduled a endoscopy and I went on my way. The day of the endoscopy, after the procedure, he came in, and told me according there was no ulcers, no hernias, no cancer nothing like that. He said according to my blood work I had Celiac Disease and he took 3 biopsies to be sure. I wasnt the only one there, my mom and aunt were there and heard it too. So it wasnt me imagining it since I was drugged up. I called to get my results because he said they would be back in 3 days. The biopsies came back negative, and it showed I had mild gastritis that I know ive had for quite awhile, and that I had a hiatal hernia. So I said well thats funny, he told me according to my blood work I had Celiac and he was sure the biopsy would come back positive and he said he was going to send me to a dietician to learn about what I can and can't eat. So the nurse looked it up and said well you have never had any blood work done to test for Celiac. So I told her I was extremely angry, that someone was being misdiagnosed either me or someone else. I have an appt to see the PA tomorrow. Im so confused. Oh and also the day of the biopsy he sent me home with a script for prilosec. Ive never complained of acid reflux. Im so frustrated and don't know what to do. Saturday I decided to go gluten free for awhile and see if it would help since obviously the doctor can't make up his mind. I don't know if its possible but within 24 hours I noticed a difference. I should tell you all my symptoms of celiac. I go between constipation and diarrhea. Usually have diarrhea once a week, and its completely liquid, I then take immodium and am fine. I have head aches, severe migraines, severe fatigue, whenever I eat anything no matter what I start sneezing within 1-2 minutes. This is gross but I notice A LOT of mucus in my stools. It looks like jelly. No oil from fat in my stools though. I do bleed occasionally. Haven't had any weight loss. Have severe neck/shoulder pain. Swollen face daily. Not sure if thats a symptom. Whenever a doctor pushes or touches my stomach it hurts very badly. Otherwise I have severe stomach pain daily and I take bentyl for it. Im sure there are more symptoms that im forgetting but those are the main ones. My mom has been diagnosed with diverticulitis and had a section of her colon removed. Both her and my dad have bowel issues and severe acid reflux. So I guess Im just wondering what all of you think of this? Is it possible to go gluten free and feel a difference in 24 hours? Im not sure what all is gluten free but im doing my best not to eat any. Is pop gluten free? I am just so confused and frustrated with it. A diagnosis of IBS is too easy to me. If it was that why hasn't all my other doctors ive seen told me that? Why didny my previous GI figure that out? Its just too easy. Forgive me if none of this makes sense, it is 4 in the morning. Oh and I should mention my gallbladder doesnt work but I cannot have it out, its too risky with my blood clotting disorders. If any of you read this and it makes ANY sense at all, please give me your opinions, direction, anything is welcome. I just need some sort of answers, this has gone on for way too long and I cannot live on pain meds and immodium the rest of my life. I hope to hear back from someone soon, and sorry again if this makes no sense!!!! Please Help!!! Thank you.

~Casey~

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Hi, hotpinkbubbles, and welcome.

There are certainly a lot of symptoms in the history you give that could be attributable to celiac/gluten intolerance. - alternating consipation and diarrhea, seizures, migraines, fatigue, mucous in stools, stomach pain, pain in neck, back and shoulders (this one is really common for some unknown reason - had it myself). family history of bowel issues and acid reflulx, gallbladder problems.

First off, it is unclear to me whether or not your doctor did do any blood testing on you at all, whether celiac testing or otherwise. You do not mention having blood drawn. If you had blood work done you need to get a copy of those results from him, and a copy of your biopsy results from your endoscopy. Post them on here and we have people who are good at interpreting these/ Get copies of ALL test results as a standard procedure to keep for your own records. If you have not had any celiac blood testing you should have it done now. There are way too many false negatives on endoscopy, and in fact there are false negatives on the blood work too, but that is the place to start. IBS is not a diagnosis, it is merely a description of a set of symptoms that are being caused by something else. What we are trying to find out is what that something else is. I would personally not stop eating gluten until I was sure I had had the blood test for celiac, because once you stop, it does make a difference, the antibodies go away, and you have to reglutenize yourself for a couple of months for the testing to be valid. That is, assuming you want a diagnosis.

It is perfectly possible to feel better off gluten within 24 hours, and it is possible to be non-celiac gluten intolerant which gives you the same symtoms as celiac disease, but you do not get the diagnosis. Those who have the neurological symtoms (migraines, seizures,) are often those who test negative for celiac disease. So it is perfectly okay to make your own diagnosis of gluten intolerance and take yourself off gluten - you do not need a doctor's permission or the advice of a dietitcian, although you do have to learn how to do the diet.

As you are finding out, doctors do not necessarily know a lot about celiac disease (and it's time they learned!!).

It sounds as though you have enough health problems without getting this kind of run-around. However, you may well find some of thse problems resolving on a gluten free diet if you are very strict with it. So yu have to make the decision - try to get valid testing, or just try the diet and see if it works. But it must be a 100% effort, no gluten lite (and no, pop does not normally have gluten in it although it's not a particularly good dietary choice from the point of view of either the high fructose corn syrup or the artificial sweetener.)

Whatever the results of any further testing you choose to have done you should give the gluten free diet a strict trial. :)

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You should definitely not be drinking pop if you have gastritis. It will definitely burn your stomach. The Prilosec is for the gastritis. That is the standard treatment for gastritis. It lowers the stomach acid content and, in theory, gives the stomach lining a chance to heal.

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