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I Think I May Have Celiac Disease...


hoyas33

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hoyas33 Newbie

I haven't been feeling well for 3 months now. My symptoms are all digestive related so I have been through almost every test (I have a colonoscopy this week).

Here are my symptoms:

Pain under sternum when eating, I could feel food hit somewhere in my stomach but this has subsided. It was the first symptom that started it all.

Pain under sternum that radiates to back. Sometimes can burn sometimes feels like a poker. GERD and heartburn ruled out by endoscopy. Doesnt' happen with every meal. BAD episodes directly following a meal then a bowel movment within 5-30 minutes after eating, then I have the pain all day long and I am severley fatigued after an "episode". Gallstones ruled out by Hida Scan (36 % ejection fraction and no clear ultrasound)

Weight loss, 10 lbs in 4 weeks. Eating somewhat normally although avoiding food at times, typically after a bad day.

Strange bowel habits on occassion. I have had some float, some gold or light yellow, some normal, a couple times loose, no diarreah though...and last week I had blood with 2. I am not talking normal hemmoroid blood, I am talking blood clot once and blood in mucous with the other. Doctor thinks this rules out celiac, but maybe you all know differently? THis is why he ordered the colonoscopy.

RUQ dull feeling at times, that is why he thought gallbladder first.

Full feeling after eating at times, severe nausea at times.

FATIGUE

Feeling depressed and irritable, but I think it is from feeling bad 90% of the time.

No desire to run or play tennis, and sports were my life.

Could this be celiac? My symptoms are triggered by eating mostly but I can have them w/o eating. Coffee also seems to trigger episodes. I am waiting on results from a blood test and it is taking forever. He ruled out all upper digestive problems and I have also had a CAT scan and Gastric Emptying test. I can only imagine it could be Celiac, lower digestive issue or a crazy virus or bacterial infection.

Your thoughts? I swear if I am diagnosed with IBS after all is said and done, I am going to lose it. I can't imagine feeling this sick the rest of my life. I have not started to eat gluten free in case he wants to take biopsies during another endoscopy.

Thanks for any replies!


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SueC Explorer

Get the celiac panel run to be sure but you already had an endoscopy???? Did they take samples from your small bowel for analysis. That should tell your GI doc if celiac is present. Alot of your symptoms could be celiac. I have that poking back pain and burning but I'm not convinced it is due to celiac....but who knows ;)

I hope you find your answers.

hoyas33 Newbie

He only took one biopsy and that was from my stomach. Apparently everything looked good so he didn't biopsy my small intestine. My stomach showed mild redness, that was the only thing he saw.

I didn't know to ask him to do that at the time because I was convinced I had an ulcer.

SueC Explorer

Then definately get your celiac antibodies checked!! See what they are then maybe another endoscopy :( . It is too bad your GI doc did not have the foresight to check your small bowel while he was in there the first time.

nettiebeads Apprentice
Strange bowel habits on occassion. I have had some float, some gold or light yellow, some normal, a couple times loose, no diarreah though...and last week I had blood with 2.  I am not talking normal hemmoroid blood, I am talking blood clot once and blood in mucous with the other.  Doctor thinks this rules out celiac, but maybe you all know differently?  THis is why he ordered the colonoscopy.

FATIGUE

Feeling depressed and irritable, but I think it is from feeling bad 90% of the time.

No desire to run or play tennis, and sports were my life.

Could this be celiac?  My symptoms are triggered by eating mostly but I can have them w/o eating.  Coffee also seems to trigger episodes.  I am waiting on results from a blood test and it is taking forever.  He ruled out all upper digestive problems and I have also had a CAT scan and Gastric Emptying test.  I can only imagine it could be Celiac, lower digestive issue or a crazy virus or bacterial infection.

Your thoughts?  I swear if I am diagnosed with IBS after all is said and done, I am going to lose it.  I can't imagine feeling this sick the rest of my life.  I have not started to eat gluten free in case he wants to take biopsies during another endoscopy.

Thanks for any replies!

<{POST_SNAPBACK}>

Your stools sound like celiac disease. The floating, discoloration is from malabsorption, especially fats. The fatigue, depression and irritability could also very well be celiac disease. If he rules for IBS, get a second opinion, or go on the gluten-free diet anyhow and see if you improve.

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    • trents
      If this applies geographically, in the U.K., physicians will often declare a diagnosis of celiac disease based on the TTG-IGA antibody blood test alone if the score is 10x normal or greater, which your score is. There is very little chance the endoscopy/biopsy will contradict the antibody blood test. 
    • JoJo0611
      TTG IgA reference range 0.0 to 14.9 KU/L
    • trents
      What was the reference range for that test? Each lab uses different reference ranges so a raw score like that makes it difficult to comment on. But it looks like a rather large number.
    • JoJo0611
      I have had the tTG-IgA blood test my result are >250.0  I am waiting for the appointment with the gastroenterologist for endoscopy and biopsies.    what are the chances it’s not coeliacs.  waiting and not knowing is so hard. Especially the eating of gluten knowing it may be causing you more harm and coping with the symptoms. 
    • knitty kitty
      @sleuth, Has your son been checked for nutritional deficiencies?  All of those symptoms can be caused by malnutrition.  I had severe malnutrition that went unrecognized by my doctors.  Intense fatigue, brain fog, depression, anxiety, and gastrointestinal distress are symptoms of deficiencies in the eight essential B vitamins, especially Thiamine B1, which becomes low first because the demand is higher when we're sick.     Celiac Disease causes inflammation and damage of the intestinal lining which inhibits absorption of essential nutrients.  Checking for nutritional deficiencies is part of proper follow up care for people with celiac disease.   Is your son taking any vitamin supplements?  Most supplements contain thiamine mononitrate which in not readily absorbed and utilized by the body.  Benfotiamine is a form of thiamine that is shown to promote intestinal healing.  Benfotiamine is available over the counter.  Benfotiamine is safe and nontoxic.   Is your son eating processed gluten-free foods?  Gluten-free processed foods are not required to be enriched with vitamins like their gluten containing counterparts.   Is your son following a low histamine diet?  Histamine is released as part of the immune response to gluten and other foods high in histamine.  High levels of histamine in the brain can cause anxiety, insomnia, and depression.  The body needs the B vitamins to make the enzyme Diamine Oxidase (DAO) to break down and clear histamine.  DAO supplements are available over the counter.  Vitamin C helps clear histamine as well.  Some people find over the counter antihistamines helpful as well, but they're not for long term use.   Nicotine has antihistamine-like properties, but can also irritate the gut.  Tobacco, from which nicotine is derived, is a nightshade (like tomatoes, potatoes, peppers and eggplant).  Nightshades contain alkaloids which affect gastrointestinal permeability, causing leaky gut syndrome.  Nicotine can cause gastrointestinal irritation and alter for the worse the microbiome. Safer alternatives to Nicotine that have antihistamine properties include Lemon Balm (Sweet Melissa),  Passion Flower, Chamomile, and Bilberry.  They can be taken as supplements, extracts, or tea.  These will help with the anxiety, insomnia and depression in a much safer way. Oolong tea is also helpful.  Oolong tea contains the amino acid L-Theanine which helps the digestive tract heal.  (L -Theanine supplements are available over the counter, if not a tea drinker.)  Tryptophan, a form of Niacin B3, also helps calm digestive symptoms.  Another amino acid, L-Lysine, can help with anxiety and depression.  I've used these for years without problems.   What ways to cope have you tried in the past?
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