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Last Ditch Rant... I Need Serious Help


Littllemel

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Littllemel Apprentice

It all started with reflux. I had had reflux for the past 2 years and I had been placed on Nexium 1x day to control it. In January of 2012 the Nexium no longer worked. The reflux was so bad it was shooting up into my mouth and burning me constantly. I could not control it. Back then I was part of Tricare Prime and was using the Navy Dr's. I was seen multiple times in the ER until I saw a GI and had a scope done on March 1 2012. The Dr indicated that there was no reflux damage but the small bowel was worn down which appeared to be Celiac Disease. They took biopsies. I started my gluten free diet immediately and got reflux moderate relief within days. The Celiac results came back negative so I tried to eat wheat again but I could not so I resigned to cut it out. The reflux slowly started to return over the next few weeks.

This Celiac group that I had joined suggested I give up Dairy as well. It helped mildly but the refluxed slowly came back. They I had started dropping food groups like Corn and Soy and had to rotate my foods every 4 days to stop "gut reactions" I was having which included IBS symptoms as well as the reflux. I had dry mouth, hypoglycemia and some mild joint pain. The Celiac group recommended I drop all allergen foods so I did. I was down to Meats, Veggies and Fruits and a few Carbs that I was rotating. In mid April I went to a Homeopath who started me on Bone Broth, ACV, Digestive Enzymes, Probiotics and L Glutamine. This helped a little but I was still having reactions. She had done and IGG test which showed allergies to Cabbage, Broccoli, Almonds, Eggs, Bananas, Cranberries, Hazelnut. I stopped these and finally got into see a civilian GI using Tricare Standard. I told her about the leaky gut but she wanted me to do a bunch of tests like fat intolerance and h pylori.

About the same time I started to see a New PCP. She did a blood test and found I was vitamin deficient on D and Iron as well as depressed. She had me go on Nortryptaline 25mg and see a shrink. This was around the beginning of May and I finally stopped having reactions things calmed down but my shrink kept upping my dosage of Nortryptaline to 75mg and Anxiety Meds and my GI wanted me to start Vit E for my Fatty Liver CT results. So around mid June I was having reactions again and to this date I have not been able to get it under control.

It is now September and I have figured out that Fats are my problem. If I have too much fat my side starts to hurt and I get gas and bloating and this leads to a food reaction. I am back to a 4 day food rotation but I have run out of protein powders to rotate. I only have rice and pea and I am afraid I will become intolerant to one of them any day now. I can eat rice, quinoa, millet and amaranth. I make smoothies using cherries and greenbeans; strawberries, prunes and carrots; orange juice and squash; and mango juice, chia and peas. I have been alternating the peas and rice proteins as best i can. I can eat chicken. Pork a little but it has too much fat. The more fat I eat the worse get. I was alternating oils in my smoothies but it started to make things worse. So now I have stopped adding oils and I only get my fats from my grains and sometimes chicken but I am only eating chicken every 4 days. I was taking Milk Thistle, Aloe and ACV but lost them all to reactions. I have also tried chamomile, yarrow and calendula tea but had reactions to those. I am afraid to try new things. Reactions now include IBS, Diarrhea, Sneezing, Body Itching, Reflux, Extreme Joint Pain all over, anal Itching and each reaction causes my bladder to swell. I end up with microscopic blood in my urine and my urine flow is weak. I take D Mannose each time it happens to stop infection so far I have been able to control it.

My overall health is extremely poor due to this stuff, my blood pressure has dropped down to 80s over 40s. I still have vitamin deficiencies except Iron which I had and IV infusion done in early Sept. I had a brain MRI which showed white matter abnormalities. I feel faint and dizzy all the time. My hair is falling out and my teeth all hurt and bleed, i have dark circles under my eyes. I have bleeding hemorrhoids now from my chronic constipation when I am not having Diarrhea. I have major depression and can't take the pills everyday without reactions. I can no longer take my allergy meds daily.

I am so frustrated and I find my self constantly breaking down. I ask my PCP to help but she just keeps saying that I should have my gall bladder out. The research I have done on Leaky Gut indicates that it is my Fatty Liver not my gall bladder causing the problems. My PCP just says there is no GI evidence to support Leaky Gut since my scopes came back negative.

I am seeing Dr Banks a nutritionist who is doing some stool lab tests to check for bugs and yeast but it takes 3 weeks to come back. I started taking raw garlic today. 4-6 cloves a day, I reek. I wonder how long until I can't tolerate it anymore.

I am at my wits end. I want my Dr to put me on TPN which is Total Paratenial Nutrition via IV so that I can get some relief in my gut but she says there is no evidence to support such a route. I guess my pain and worsening symptoms are not good enough a reason. I want to go to the hospital but they never help me, they usually give me a bag of saline and send me on my way. I may go to the ER and tell them I have suicidal thoughts so they will admit me and then I will refuse to eat and maybe then they will put me on TPN. Lately it's not far off from the truth.

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beachbirdie Contributor

It all started with reflux.

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I don't wonder that you are at your wit's end. You have a lot of misery going on and I'm sorry the medical world can not seem to find a path for you.

Not being a medical professional, it is difficult to say anything too specific, and it is also difficult because you've had so many suggestions from so many people, one more might just sound like so much "noise". Be assured, there are a couple of folks here who have been at death's door (NOT an exaggeration) and come back from it. So my first suggestion is to not give up hope.

Next, do you think you might be able to go back into your post and apply a little edit? Perhaps you could break it up into smaller paragraphs of only a few lines each, it is much easier to read on a computer screen! You will get a lot more people to read through the details with comprehension, (I DID read them, by the way!).

That said, have you considered going grain-free altogether? You might want to drop all your supplements, and go to a VERY simplified grain-free diet. Eat only the lean meats that have proven to agree with you, only the vegetables and fruits that have proven to agree with you, only the nuts and dairy that have not given you trouble. I will go so far as to suggest you might be a candidate for the Open Original Shared Link or the Open Original Shared Link diet. They are restrictive, but once you get going you can do well following the food lists that you can get for free on the websites. I'm partial to the Specific Carbohydrate (SCD) diet, and you can start it without going through all the introductory stuff. Just start using the food lists.

It is a diet that you want to give plenty of time to work. It can take a month or more to feel the effects. It was a lifesaver for my daughter-in-law.

The paleo/primal way of eating might also be a good try. Check out Open Original Shared Link for more. Lots of good reading there.

Did they do any kind of testing for autoimmune diseases? White matter in the brain can be caused by a number of things.

I'll leave you in the hands of others for more thoughts...

Best wishes to you.

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IrishHeart Veteran

You sound like me a few years ago and my first thought is: too many cooks. :blink:

You have too many people offering advice and "treating you" and as much as I wanted to believe in the value of homeopathy, the truth is, all those supplements and herbals can often cause more harm than good.

The first thing I noticed was this: your initial GI Dr. "indicated that there was no reflux damage but the small bowel was worn down which appeared to be Celiac Disease."

"worn down?" what does that even mean? erosion?? well, he seems to have thought you had celiac disease--why not go back to him and get the help you need?

I am going to suggest something, but realize that none of us are doctors and these are our opinions often based on bad and good experiences or research we have read.

Something is causing your health problems. Something is causing malabsorption which is creating deficiencies. A non-alcoholic fatty liver can be caused by a number of problems and diseases.

Your doctor says you do not have a "leaky gut" because the mainstream medical community only recognizes that in extreme cases, based on testing. (it's called "gut permeability") Alternative medical people think it is more prevalent and treat almost everyone who comes in to them with a "leaky gut protocol" which is what you are doing (and what I did for 18 months to no avail. why? I had CELIAC all along and no one diagnosed me with it because my blood test was falsely negative.)

Doctors often throw medications at symptoms but this will not resolve the cause of the problem. Of course you are depressed and anxious, hon--you feel like crap everyday and nothing is helping.

I did rotation diets and eliminated foods and nearly starved to death because everything made me sick. Everything.

What would happen if you stopped taking all this "stuff" and just ate pure, whole foods? No blending, no juicing, no adding things in or taking this rather large number of supplements? (prunes in your smoothie are going to create a laxative effect)

IgG tests do not show food allergies. IgE tests show food allergies, by the way.

Just eat a simple, easy diet. Make a list of foods you know are not problematic. Stick to those and make sure you take out all gluten (you mention you avoid wheat, but you realize we need to avoid rye, barley and oats as well, right? Only certified gluten-free oats are acceptable but can be difficult to digest )

I had so many of the symptoms you list here and I did all these treatments and my heart aches for you because like you, I did all I could to alleviate them, but in the end, it was going on a strict gluten-free diet, made up of whole foods--- but no dairy or soy --that I finally began to heal. It took me nearly 10 months before I started to think, " I'm maybe turning a corner". And 15 months before I started absorbing again and my weight started to come back up. My hair continued to fall out that entire time. I had horrid pain in my joints, bones and muscles. I could barely sleep for 2 years.

Antidepressants and anti-anxiety meds are notorious for causing constipation. This could explain your alternating bowels. Some foods cause the D and the meds will cause the C.

You're just like I was--a gerbil going around and around in the wheel and getting nowhere. I dumped all that junk --herbals, meds (but you should never just stop those prescription drugs cold turkey and I am not telling you to do this--I learned that the hard way) and I just ate food, small amounts throughout the day and I drank water--lots of it. Nothing acidic to eat or drink. I took the probiotics and the digestive enzymes and started to heal. If you are not taking digestive enzymes and probiotics in this "regime" they have you on, those are the 2 that celiacs most often benefit from.

Just some thoughts. I really hope you can get some relief soon.

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Bubba's Mom Enthusiast

You really have been having a hard time. I've been there..and still having problems. It might be a good idea for you to try a steroid that stays in the intestine and is usually used for Crohn's? It's Entocort. I went on it and I didn't see miricles but it has allowed me to heal a bit faster.

That, along with the digestive enzymes and probiotics are a must IMO.

I've recently been glutened and found I went back to square one in my inability to handle high salicylate foods. I had gotten to where they didn't bother me.

I'm trying to share what's working for me. i couldn't handle a lot of the foods you eat.

If you want to look into it and try a low sal diet here's a link. MANY of your symptoms could be salicylate sensitivity. It might be worth a try?

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GottaSki Mentor

You are not alone. My first year post celiac diagnosis was horrid. For over two years I kept a detailed food log while removing individual foods or groups of foods. I had some minor victories, but no major nor consistent improvement.

I see at one point you were eating meat, vegies and fruit. Did you ever eat just these consistently and if so was there any improvement? Your diet currently has many items that I can not tolerate. I only improved when I removed the lectin groups of:

Dairy, Grains, Legumes and Nightshades (potato, tomato, ALL peppers and eggplant).

I also removed other common allergens of eggs, nuts and seeds.

I had already removed bananas (constipation) and citrus fruits (these had been bothering me for 5 years).

I started with greens/fruit smoothies for three days followed by an entire month of strictly meat, fish, vegies (no nightshade) and fruits (none that bothered me). I had amazing improvement.

For the subsequent six months I trialed one food ITEM at a time, not food groups. I'd trial an item watch for reaction, return to base foods, wait three days to trial another. I had harsh reactions to many, many surprise foods - I finally understood why we could not figure out what was wrong -- it was just too complex an equation to figure out by trying to remove foods one at time.

Here is an email I wrote back at the beginning of the elimination diet to explain to family why I was going on such a strict diet:

I've been doing research into the science behind the elimination diet - I was trying to find a reasons to justify cutting out so many food groups - for the past few days I've been researching the science of lectins - certain lectin groups being the reason for some celiacs not improving on gluten free diet.

It seems that ALL autoimmune diseases can be improved/possibly be put into remission with the removal of the offending toxic lectin group. Also worth noting is that once gluten is completely removed from diet it can take 6 months to two years for other lectins to cause symptoms!

The science of the relationship between lectins and autoimmune disease is fairly new - there are many research studies currently underway, but there are no blood or antibody tests to check all of the different lectin groups that are potential offenders, so the elimination diet is the only way to determine a problem.

Main offending groups are:

Nightshades - potato, tomato, peppers, eggplant

Dairy

Eggs

Legumes - peanuts, peas and all beans including green, sugar snap, etc.

Grains - ALL grains (corn, rice and quinoa included - all of which I've eaten much more of since going gluten free)

The above mentions research I had done - but please don't ask me to sight references as I read oodles of scientific journal papers combined with internet sites to reach the best Elimination Diet for autoimmune disease.

I do hope you find a safe diet that will allow you to heal -- I'm currently having a very rough period of health - but I did have an entire 8 months where I was healthier than EVER in my life. I had a flare of symptoms about a month after I had added the items that passed the elimination trial phase. The only foods I did not have reactions upon trial were eggs, butter, cheese, small quantities of rice and some potatoes. EVERY other food had moderate to major reactions that where all quite different.

As you have read by the other posts - unfortunately there are some of us that take a very long time along a rough road to heal. There have been days when I have no hope or patience left - when that happens I come here - it is comforting to know that I am not the only one whose system was compromised so severely and that others have healed from similar circumstances. I hope it brings you comfort as well.

Hang in there - keep asking questions and trying to figure out your puzzle - doctors can assist us, but there are some things they just can't repair right now. I had a prominent gastroenterologist admit that there are cases of "functional gastrointestinal disorder" that they really don't know enough about! I was nearly in tears after that visit because it is one thing to be completely frustrated with doctors - quite another to have them verbalize that I fall into a group that just hasn't been researched enough.

Ok...even thinking about that conversation was depressing to me. Hang onto the hopeful stories. Give yourself time to heal and celebrate even the tiniest of victories :)

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GFinDC Veteran

Hi,

Here is a link to the Ask a patient site for reviews of Nortypaline. Might be interesting or not. Seems like a mixed bag of reactions. Which is typical really.

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Your doctor wanted to do H. Pylori testing. Was it positive?

Have you verified the Nortrypiline is gluten-free?

It is reasonable to feel depressed when you are sick. That just kinda makes sense. Some antidepressants have affects on the digestive tract also. Some doctors prescribe them to help with digestive symptoms.

Your right side hurting when you eat greasy/fatty foods does sound like a gall bladder issue. I suspect your doctor is right about that. Gall bladder issues are somewhat common for celiacs who are untreated by the gluten-free diet. You may not need to have it removed though, it could possibly repair itself.

Take a look at Kimball's Biology pages for a picture on top right of the GI tract. Might help.

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You don't need to eat any grains or substitutes to live. You can live just fine eating meats, veggies, etc. Grains are ok but you may need to take a break from them for a while.

Are you on acid blockers because of the reflux? Acid blockers can cause lots of problems with bacterial infections etc. The stomach acid is very important in defeating incoming bacteria and germs, so if it is knocked out by acid blockers your system is wide open to assault.

You should not take any peppermint if you are having reflux,. Don't know if you are but it would cause the stomach valve muscles to relax and that could make reflux.worse.

I suggest you stop all the protein powders also. At least for a few weeks to see if there is any improvement.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

FAQ Celiac com

http://www.celiac.co...celiac-disease/

Newbie Info 101

http://www.celiac.co...ewbie-info-101/

What's For Breakfast Today?

http://www.celiac.co...reakfast-today/

What Did You Have For Lunch Today?

http://www.celiac.co...or-lunch-today/

What Are You Cooking Tonight?

http://www.celiac.co...ooking-tonight/

Dessert thread

http://www.celiac.co...399#entry802399

Easy yummy bread in minutes

http://www.celiac.co...ead-in-minutes/

How bad is cheating?

http://www.celiac.co...t-periodically/

Short temper thread

http://www.celiac.co...per-depression/

Non celiac wheat sensitivity article

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Juliebove Rising Star

Sorry to hear of your problems. My husband keept pushing me to get Tricare Prime and I simply will not. Reason being I am afraid that I will get a PCP who will tell me that I don't need to see a specialist. For that reason we had the Standard but now that he is retired it is the For Life.

I have a fatty liver. I have read that most people who are overweight will have one. It doesn't usually cause symptoms. But I'm not going to say that it does not. It does sound to me like you are having gallbladder troubles. But I'm not a Dr.

I have GERD and nothing helped me. I started taking D Limonene for that. I can't really tell you one way or the other if it is helping because unlike you, most of the time I have no symptoms. I am taking Carnosine for H Pylori. I was never tested for that and don't know that I have it. Just a stab in the dark. I have read that if you do take it, you only need to take it for 60 day. It wasn't expensive so I thought I would give it a try.

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lovegrov Collaborator

I am not a doctor and I cannot diagnose you, but I know that my mother had some of your symptoms -- pain, relfux -- and after she had her gall bladder out, things improved immensely. Reflux isn't all gone but she hasn't returned to the hospital for gut pain in a year now.

richard

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koz158 Apprentice

Mel,

You have an incredibly similar situation to my wife.

From what I have learned, just to reassure you, the IgG antibodies you are producing against those food proteins indicate leaky gut. Any chronic state of inflammation in small intestine will result in damage to the epithelial and cause your immune system to react to whole food protein-

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Roda Rising Star

Have you had an ultrasound and HIDA scan of your gallbladder? It's worth checking out to see if it is causing some of your symptoms. Some of your symptoms could be caused by a bad gallbladder, but I'm not a doctor but is worth ruling it in or out.

I hope you get some relief soon.

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Littllemel Apprentice

Well the Garlic was short lived, I was intolerant to it by the end of the day. I started Mastic Gum instead which kills H-pylori and other bacteria. I went and saw another GI for a 2nd opinion and he basically does not believe in Leaky Gut. Says there is no scientific evidence to prove it. He wants me to go on Amatryptaline instead and try the Elemental Nutrition and a SIBO test. He doesn't understand that once I try to eat something for more than one day I become intolerant to it. So once i start the EN it will only be a day or 2 before i can't take it anymore but I will give it a try. I had to mail order it so it won't be here for a couple of days.

I went and visited my surgeon yesterday too, he doesn't believe it is my gallbladder either and wants me to do TPN and will discuss it with my PCP and other GI today. It scares me to do TPN but I am literally wasting away. I can't eat anything with fat in it with out a reaction which are gas, bloating, liver side pain and dizziness. And then once I have a fat reaction, I will have a food reaction shortly thereafter which is IBS, itching, sneezing, all over joint pain, diarrhea with whole pieces of food in it. I tried the HCL and it works well to digest my food better but I am just afraid to take it all the time and become intolerant to it since its made from beets. I can't do ACV anymore since i became intolerant to apples.

I dropped the carbs so now I am just eating veggies and meats but the meats bother me too since they have fat in them. I already had the HIDA scan and Ultrasounds of my liver done, the HIDA was negative and the ultrasound showed a benign tiny polyp but it wasn't blocking the ducts. I have a 50000 unit compounded vitamin D RX but i have to take it with fat and even when i take it with the meats it doesn't seem to absorb since I still feel bone and teeth pain and my hair is still falling out. I feel like this is the end for me and there is nothing else to be done. I hope something works soon.

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kareng Grand Master

You might want to find out what diagnosis he is using to order TPN. Then have a discussion about that.

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koz158 Apprentice

Mel. My wife and I are praying for you.

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IrishHeart Veteran

Well the Garlic was short lived, I was intolerant to it by the end of the day. I started Mastic Gum instead which kills H-pylori and other bacteria. I went and saw another GI for a 2nd opinion and he basically does not believe in Leaky Gut. Says there is no scientific evidence to prove it. He wants me to go on Amatryptaline instead and try the Elemental Nutrition and a SIBO test.

Food intolerances develop over time. It's not possible to become intolerant to a food protein in one day. There is no time for antibodies to develop.

You feel as if everything is making you sick because your GI tract is inflamed. The last thing I could put down my burning throat was ACV, peppermint or any other "remedies" the ND suggested.

As I told you, conventional medical doctors do not acknowledge "leaky gut syndrome", however, by doing a SIBO test, he IS looking for pathogens or intestinal bacterial overgrowth, so he is trying to get to the root of your problem.

Honestly, the fat malabsorption can be caused by a variety of things.

Causes

Acutely abnormal intestinal lining due to an acute intestinal infection, use of antibiotics, particularly Neomycin, and alcohol.

Chronically abnormal intestinal lining present in Crohn's Disease and Celiac Disease.

Improper intestinal environment due to bacterial overgrowth or parasites in the digestive tract.

Inadequate gastric mixing as a result of fistula in the gastric environment, and gastroenterostomy.

Short bowel as a result of intestinal resection.

Impaired transport of enzymes.

My suggestion is the same as Karen's.

Ask this doctor what his Diagnosis is.

Follow through with this ONE GI doctor and try to stop taking so many "things" people suggest ---because they may not be helping the situation at all.

And the symptoms you describe can also be attributed to Crohn's. Was that ruled out?

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Gemini Experienced

I am not a doctor and I cannot diagnose you, but I know that my mother had some of your symptoms -- pain, relfux -- and after she had her gall bladder out, things improved immensely. Reflux isn't all gone but she hasn't returned to the hospital for gut pain in a year now.

richard

I agree with Richard, Mel. When a person cannot eat and it gets to the point where you are down to jello or water or something along those lines, have a good long look at the gallbladder. When it is diseased or malfunctioning, you cannot tolerate fats AT ALL. None. It'll make you sick and in pain. The other tests they are doing are good but don't ignore your gallbladder.

Hope you get some answers because TPN will not solve the issue, it's supposed to be a short term, emergency treatment. Best of luck to you!

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kittty Contributor

What concerns me is that you've tried so many solutions, either food combinations or medications, in such a short period of time. No wonder your body is so confused! You're probably still suffering from side-effects from past medications too. I took anti-depressants for only two months, but it took over a year to get over the side-effects they caused.

I second what IrishHeart said - this sounds a lot like Crohn's Disease, especially the acid reflux and the inability to absorb fats. A friend of mine in college with Crohn's had those two problems severely.

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IrishHeart Veteran

Guys,

We are all suggesting the gall bladder as a problem to her, (I had the same issues with digesting fats before mine was removed, too)

but she says in her second post:

"I already had the HIDA scan and Ultrasounds of my liver done, the HIDA was negative"

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GFinDC Veteran

In Crohn's they sometime use feeding enteral nutrition through a nose tube. There are pumps that can provide the feeding at a controlled rate while you sleep. That works well for some people.

Another thing you can try for H.Pylori is DGL (deglystereninzed licorice).

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flowerqueen Community Regular

You have my sympathies, I am going through something similar myself, and know how hard it is trying to get answers and pinpointing what causes illness. Most of it has been said before, but I was just wondering, as you have given up dairy, have you check the ingredients in Nortryptalene? (and amitriptyline) as in UK this contains lactose and if you are intolerant to lactose, that could also be an issue.

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shadowicewolf Proficient

What was the result of the HIDA scan? Anything below 35% and they'll take the gallbladder out.

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lovegrov Collaborator

Guys,

We are all suggesting the gall bladder as a problem to her, (I had the same issues with digesting fats before mine was removed, too)

but she says in her second post:

"I already had the HIDA scan and Ultrasounds of my liver done, the HIDA was negative"

I have no idea what HIDA is.

richard

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kareng Grand Master

I have no idea what HIDA is.

richard

I keep hearing about them so I looked them up.

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"A HIDA scan is an imaging procedure that helps track the production and flow of bile from your liver to your small intestine. Bile is a fluid produced by your liver that helps your digestive system break down fats in the foods you eat.

A HIDA scan, which stands for hepatobiliary iminodiacetic acid scan, creates pictures of your liver, gallbladder, bile ducts and small intestine. Cholescintigraphy, hepatobiliary scintigraphy and hepatobiliary scan are alternative names for HIDA scan.

A HIDA scan is a type of imaging study called a nuclear medicine scan. This means the HIDA scan uses a radioactive chemical, or tracer, that helps highlight certain organs on the scan. "

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shadowicewolf Proficient

I keep hearing about them so I looked them up.

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"A HIDA scan is an imaging procedure that helps track the production and flow of bile from your liver to your small intestine. Bile is a fluid produced by your liver that helps your digestive system break down fats in the foods you eat.

A HIDA scan, which stands for hepatobiliary iminodiacetic acid scan, creates pictures of your liver, gallbladder, bile ducts and small intestine. Cholescintigraphy, hepatobiliary scintigraphy and hepatobiliary scan are alternative names for HIDA scan.

A HIDA scan is a type of imaging study called a nuclear medicine scan. This means the HIDA scan uses a radioactive chemical, or tracer, that helps highlight certain organs on the scan. "

Basically, they make you lay still for an hour and a half (completely), inject you with some radiation stuffs, put you under the scanner and watch as it goes through (you can watch to if they have a moniter for it). After 1 hour has passed they come in with this huuuuuuuuuuuuge surenge and enject it into ya (stuff to flush the radiation out), then watch how quickly it leaves your gallbladder area.

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Littllemel Apprentice

So last week I was in the ER for right flank pain again. I thought it was my liver again since I was having so many problems with it and fats. They took a urine sample and said it looked like I had a UTI but they cultured it to be sure. So Monday the 17th they called and said it was definitely a UTI and called in some antibiotics. So I start Keflex Monday and starting Tuesday all my GI problems die down. No more gas, bloating or D/C. Reflux has even died down. So should I assume this is SIBO? I'm still waiting to hear back from my GI about this new development. I did a SIBO test but the results aren't due til next week. So will all of my symptoms come back when I am off the Keflex?

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    • trents
      And the fact is, no two celiacs will necessarily respond the same to gluten exposure. Some are "silent" celiacs and don't experience obvious symptoms. But that doesn't mean no harm is being done to their gut. It just means it is subclinical. 
    • AlyO
      Thank you, Trents.  I appreciate your helpful and friendly reply. It seems more likely to be a bug.  It has been a pretty severe bought. I feel that I don’t have enough experience to know what signs my little one shows after exposure to gluten. 
    • trents
      Hannah24, be aware that if you are on a gluten free diet, you will invalidate any further testing for celiac disease (except genetics) and would need to go back to eating significant amounts of gluten for weeks or months to qualify for valid testing.
    • knitty kitty
      Hello, @Hannah24 Have you had a DNA test done?  Celiac Disease is genetic.  You must have at least one gene to develop celiac disease.  You don't have to be consuming gluten for a genetic test.   Anemia, diabetes and thiamine deficiency can cause false negatives.  Some lucky people are seronegative, but still have celiac disease.  Peripheral neuropathy, tingling in hands and feet are symptoms of vitamin deficiencies.  Vitamin C, Thiamine B1, Niacin B3, Pyridoxine B6, and Cobalamine B12 can each cause peripheral neuropathy.  These same vitamins are needed to produce blood cells.  Most undiagnosed Celiacs suffer from nutritional deficiencies. The DNA test would be helpful.
    • trents
      We do hear of cases of remission but they generally eventually revert back. I wouldn't push your luck.
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