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Last Ditch Rant... I Need Serious Help


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23 replies to this topic

#1 Littllemel

 
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Posted 08 September 2012 - 06:52 AM

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.


http://www.liverdoct...blems/leaky-gut
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#2 beachbirdie

 
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Posted 08 September 2012 - 09:34 AM

It all started with reflux.

http://www.liverdoct...blems/leaky-gut




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 Specific Carbohydrate Diet or the GAPS 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 Mark's Daily Apple 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.
  • 1
1999 - Hypothyroid
2003 - Hashimoto's Disease
2008 - Diverticulitis
2009 - Significant Vit D Deficiency
2011 - Diverticulitis again
2011 - HLA-DQ2.2
2012 - TtG IgG positive... I am now, finally, Gluten Free - 5/16/2012

#3 IrishHeart

 
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Posted 08 September 2012 - 10:21 AM

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.
  • 1

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#4 Bubba's Mom

 
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Posted 08 September 2012 - 01:58 PM

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?
http://salicylatesensitivity.com/
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#5 GottaSki

 
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Posted 08 September 2012 - 04:11 PM

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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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#6 GFinDC

 
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Posted 09 September 2012 - 10:11 AM

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.

WWW.ASKAPATIENT.COM Nortryptaline

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.

The Human Gastrointestinal (GI) Tract

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
http://www.nature.co...jg2012236a.html
  • 0
Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#7 Juliebove

 
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Posted 09 September 2012 - 07:53 PM

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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#8 lovegrov

 
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Posted 10 September 2012 - 10:35 AM

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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#9 koz158

 
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Posted 10 September 2012 - 07:54 PM

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-

When the immune system senses a serious infection of foreign invader the normally controlled inflammatory process revs up. After repeated assaults, the inflammation causes the villi to atrophy (shrink) and eventually flatten, losing their absorptive power. The loss of the villi reduces the surface area available for absorption and destroys the enzymes in the microvilli responsible for digestion and transport of nutrients. (Without the epithelial cell barrier, out immune system begins to make more antibodies to food proteins.) -- Celiac Disease, A Hidden Epidemic; Peter H.R. Green, MD


Your nugget-doctorologist isnt helping matters by prescribing Nortriptyline. From what I have researched most generic forms of Nortriptyline do not contain gluten, but they do contain Sodium Laurel Sulfate (SLS). SLS is a detergent or pesticide depending on who you ask and it is included in the medication so that it is more readily absorbed by the digestive tract. It does this by denaturizing (a fancy word for burning) the epithelial layer of your small bowl and while it isnt the whole of the problem, Im sure it isnt helping.

The first thing I would recommend is changing that med to something that doesnt contain SLS or some other irritant. It may suck for a while, my wife is slowly eliminating hers (she was at 150 mg), and withdrawal sucks. Along those lines I would also advise you to replace all of your cosmetics, soaps, and hygiene products to natural alternative that are SLS, gluten, and every other man-made dye, fragrance, or flavor free. Dyes especially are notorious for enhancing inflammatory response. In fact my mom suffered from asthma for years and was becoming progressively more sensitive as she grew older. She has eliminated artificial dyes from her diet and no longer has asthma. She still have her inhaler, but she only needs it if she eats like crap. Although we havent gotten rid of the Nortriptyline completely we have seen vast improvements in complexion (even mine) just by replacing our soaps and whatnot and her inflammatory response is lower than it has been.

Right now our ND has her taking a product called GI Encap and for a few days she is supposed to eat only broth (this is specifically for the leaky gut) juice and water. She has been taking some neurotransmitter and adrenal support supplements as well as a B-complex and we have seen improvement with her depression. Until the pain is eliminated though, the depression will only be managed. Ill let you know if we have any luck with the GI Encap.

Magnesium citrate and or apple cider vinegar may help with the constipation. Weve had luck with both. My wife was on an acid reflux type drug for a while and we are both certain that it has resulted in her digestive tract slowing down and decreased hydrochloric acid production (those sorts of drugs are only supposed to be taken for 2 weeks). It sounds like the same issue for you too.

I think the garlic will help in general so stick with it if you can. I cook with a lot of garlic (always have) and she craves it. It is an excellent source of vitamin C.

You might want to get you adrenals checked (you hair falling out indicated adrenal failure) and check for heavy metal poisoning.

I appreciate youre frustration. My best guess is the same I have for my wife; your whole digestive tract is inflamed and being irritated by pretty much anything. It just my guess. I hope some of this info brings you some relief.
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Do not be overcome by evil, but overcome evil with good.
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#10 Roda

 
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Posted 10 September 2012 - 08:41 PM

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.
  • 0

Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#11 Littllemel

 
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Posted 11 September 2012 - 03:12 AM

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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Gluten Free since 3/2/2012
Dairy/Soy/Corn Free since 04/06/2012
Leaky Gut 5/2012
Candida 09/2012
Porphyrins in Urine 10/2012

#12 kareng

 
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Posted 11 September 2012 - 04:43 AM

You might want to find out what diagnosis he is using to order TPN. Then have a discussion about that.
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#13 koz158

 
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Posted 11 September 2012 - 04:56 AM

Mel. My wife and I are praying for you.
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#14 IrishHeart

 
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Posted 11 September 2012 - 05:29 AM

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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#15 Gemini

 
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Posted 11 September 2012 - 07:15 AM

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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