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Sick And Getting Worse


still.joyful

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still.joyful Apprentice

Yes, like everyone else here, I am TIRED OF THE STUPID IBS TITLE!

I am 23 going on 99 (well, my body certainly feels like it ;) and I've had a 'sensitive' stomach my ENTIRE life. Be prepared for bluntness...

I had bad colic as a baby. Growing up as a child, I'd have such bad 'gas pains' that I couldn't walk. Going into my teen years, I started developing 'IBS' like symptoms (frequent bowel movements, urgency to use the bathroom). In college, I developed gallbladder disease, but don't fit the stereotype of someone with gallbladder disease (I am a stick! 94lbs, 5'3''). Now out of college, I have pretty much every digestive problem imaginable...here they are, the lovely symptoms:

Gas, bloating, horrible abdominal cramping, stomach ache after nearly every meal, weight loss (I've lost 12 pounds since college), the 'runs', and (gross, I know) something that appears to be mucous in my stool. I also get stomach viruses often...I don't get it! I am also lactose intolerant, I can handle very small amounts of dairy, but I haven't had a glass of milk in 10 years. Stool also tested positive for high white blood cell count. Does any of this sound familiar to anyone?

In college, I also developed these symptoms: Severe night sweats, muscle cramping and spasms, heat intolerance, dizziness.

Went back to the doctor today (unwilling, I hate going to the doctor!!!) and now they want me to go on a gluten free diet. My blood test didn't present any gluten allergy, but I haven't had a colonoscopy yet...that's next, and I am dreading it VERY much :(.

Sad thing is, I LOVE TO BAKE! But baked goods make me sick, I'm not sure if it's the sugar or the gluten. I am not sure what to do at this point...I'm tired of waiting, that's for sure!


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Lisa Mentor

These are the blood test that I hope you had:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level

Can you give us your blood work results? An endoscopy exam and biopsy would be helpful if your doctor suspects Celiac.

GlutenWrangler Contributor

I think the colonoscopy will help to answer a lot of questions for you. It can rule out a bunch of different things and narrow things down a little. Good luck and I hope you feel better soon

-Brian

ravenwoodglass Mentor

Your history and issues do sound like you could be celiac. You should ask the doctor to do an endoscopy while he is doing the colonoscopy. Or perhaps even do the endo first and leave the coloscopy for later. The endo is the test he should do if he suspects celiac disease and there are no nasty preps to drink before it. If you do have celiac it really is not as bad as you might think. You can still bake and eat stuff like pizza and cakes they just won't be made of poison. The difference in your quality of life once you are on the diet will be incredible and well worth the trouble. It can be hard at first but you have come to the right place for support and guidance.

ShayFL Enthusiast

I second checking to see if they did the complete Celiac panel (NOT GLUTEN ALLERGY) and Endoscopy (NOT COLONOSCOPY) at this point. You can do that one later.

RiceGuy Collaborator

I agree that Celiac seems probable. But, with all the symptoms you listed, I'm also thinking that those nasty opportunistic microbes could be adding to your discomfort. Intestinal yeast overgrowth (AKA candida overgrowth) has been (or is) a problem for many on this board. There are numerous threads about candida, and one test which is supposed to be accurate is called the Open Original Shared Link, which you can do yourself.

Hope you get well soon! You've come to the right place too!

still.joyful Apprentice

Hi All,

I do not know what to think at this point and I am very scared/frustrated. I had an endoscopy 1.5 years ago before having my gallbladder removed and it came back normal; the doctor didn't do a biopsy. I tested negative for Celiac's disease in the bloodtest. However, when I started developing other symptoms, muscle weakness, dizzy spells, low blood sugar issues, I got a blood test that revealed that I tested positive for antinuclear antibodies (which means I have some autoimmune disease). The doctor said he wouldn't be able to diagnose me until I developed new symptoms. That's the only blood test I have knowledge of, I haven't had the full panel.

I think I mentioned this earlier on, but I had a high white blood cell count in my stool when it was tested a few years ago.

Basically, I've had stomach problems my ENTIRE LIFE. But they've gotten worse as I've gotten older. I have a constant burning pain in my stomach and nausea, with stomach cramps and occasional D. I notice that the only time I feel no pain is when my stomach is empty, but then my blood sugar drops.

I've been on the gluten-free diet for 2 days and I haven't felt nauseous these two days and my stomach cramps have subsided...I know it's still too early to tell, and I really don't want to get too optimistic, but I don't know where to go at this point. Is there a test they can do to see if I'm just intolerant? I am lactose intolerant...going back to the gastro in a few weeks, is there another test I should request??

Thanks so much for your replies, guys!


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Rachel--24 Collaborator

All of the symptoms you listed are common in people with Lyme Disease or other chronic infections.

Also, a high white blood cell count can be caused by infection.

Your Celiac results may have been negative but gluten intolerance is also common for those with Lyme or chronic gut infections. Its also definately possible to have more than one condition contributing to symptoms.

I agree with the previous posters...get the full celiac panel and the endoscopy BEFORE you start the diet. Once the tests are out of the way you can try the diet and see if it helps you. If you continue to have problems I would look into other possibilities for those symptoms (esp. Lyme).

For more info. on Lyme check out this thread:

Open Original Shared Link

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    • trents
      So, you had both and endoscopy with biopsy and a colonoscopy. That helps me understand what you were trying to communicate. No, no! It never occurred to me that you were trying to mislead me. It's just that we get a lot of posters on the forum who are misinformed about what celiac disease is and how it is diagnosed so I need some clarification from you which you were so gracious to give.
    • barb simkin
      I had both the genetic genes for celiac.  My gastroenologist advised he also took a biopsy during one of my colonoscopies and endoscopy and advised I had celiac disease, along with stomach ulcers from my esophagus stomach down to my small bowel. I was shown the ulcers on the catscan and endoscopy report.  I also had polyps in 3 places throughout my large bowel. I was on a strict diet for months following.  I am sorry if I didnt define how I was diagnosed with celiac disease.  I am sorry if you think I was misleading you. I also had to pay $150.00 for the genetic testing.
    • trents
      So, I'm a little confused here. I understand you to say that you have not been officially diagnosed with celiac disease. Is this correct?  You have had genetic testing done to check for the potential for developing celiac disease and that was positive. Is this correct? I think you meant to type "gluten sensitivity" but you typed "gluten insensitivity". Just so we are clear about the terminology, there is celiac disease and there is NCGS (Non Celiac Gluten Sensitivity). They are not the same but they have overlapping symptoms. Celiac disease causes damage to the small bowel lining but NCGS does not. NCGS is often referred to in short form as gluten sensitivity. However, people often use the terms celiac disease and gluten sensitivity interchangeably so it can be unclear which disease they are referring to. Genetic testing cannot be used to diagnose celiac disease but it can be used to establish the potential to develop active celiac disease. About 40% of the general population has one or both of  the genes that have been most strongly connected with the potential to develop active celiac disease but only about 1% of the population actually develops active celiac disease. This makes the genetic test useful for ruling out celiac disease but not for diagnosing it. A colonoscopy cannot be used to diagnose celiac disease because it doesn't permit the scope to go up into the small bowel where celiac disease does the damage. They use an endoscopy ("upper GI) for checking the small bowel lining for celiac damage.
    • barb simkin
      I did nor read the chocolate pkg as it was of fered to me and I ate 2 pcs. I do know that only very dark chocolate and and a very few others are gluten free. Most alcohols contain gluten. I have several yrs of not knowing my celiac condition as docs would not do the test. After looking on the internet about my sufferings I insisted on the gene trsting which showed positive for gluten insensitivity and a biopsy on my next colonoscopy that also showed positive which could not help the damage done to my small bowel. So I very rarely have a glass of wine
    • trents
      @barb simkin, are you sure the chocolate products are gluten-free and not "manufactured on equipment that also handles wheat products and tree nuts", i.e., cross-contamination? And what kind of alcoholic beverages are we talking about? Most beers are made from gluten-containing grains. Just checking.
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