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What Is Wrong?


minton

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minton Contributor

Yes, the candies are dyed. 3 different colors are listed in ingredients. That is a good idea and I will pay close attention to that... on a happier note, the canker sores are FINALLY healing and no new ones have appeared!


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minton Contributor

Great, I just got sick in school. According to school rules, they sent me home. This indigestion hasnow caused me to throw up! And I'm pretty sure I saw blood in that vomit. I have an appointment at 2:40 with my favorite doctor. I have a list of all the medicines I've taken in the last 4 weeks and my symptoms. And just watch, He will have a simple explanation for it all. He always does. My doctor is a genius.

rinne Apprentice

I'm glad you'll be seeing your doctor, I hope you get some answers and are feeling better soon. :)

minton Contributor

Doctor seemed a bit stumped to me, but he did help some and ordered some tests for more...

The rash is not DH or psoriasis in his opinion. He prescribed a cream, but the rash is going away on its own as well.

He thinks my balance is ear related and told me a few exercises to try. They seem to have helped. (My dad also returned the railings to the stairway finally...that was a 3 week paintjob!)

My energy is no better, but I have begun drinking Acai juice and it has allowed me to stay awake. I am watching for further improvement.

The doc ordered a CBC, thyroid levels, another test I don't remember, and, JUST IN CASE, a pregnancy test. We both agree we don't trust the pill or at home tests. Pregnancy is likely NOT the issue.

He gave me some ideas for my indigestion as well and told me we need to wait for the blood results for more information.

On a lighter note, my older, married friend and I were messing around yesterday (she is pregnant) with a fetal heartbeat monitor and other than hearing her baby's heartbeat (no heartbeat for ME!), we also found out that I have rusty hinges for joints! HAHAHA, actually that's a planned discussion next appointment... Some joints creaked horribly, others sounded like they popped out of place when I moved them. It was a bit scary.

ravenwoodglass Mentor
Doctor seemed a bit stumped to me, but he did help some and ordered some tests for more...

The rash is not DH or psoriasis in his opinion. He prescribed a cream, but the rash is going away on its own as well.

He thinks my balance is ear related and told me a few exercises to try. They seem to have helped. (My dad also returned the railings to the stairway finally...that was a 3 week paintjob!)

My energy is no better, but I have begun drinking Acai juice and it has allowed me to stay awake. I am watching for further improvement.

The doc ordered a CBC, thyroid levels, another test I don't remember, and, JUST IN CASE, a pregnancy test. We both agree we don't trust the pill or at home tests. Pregnancy is likely NOT the issue.

He gave me some ideas for my indigestion as well and told me we need to wait for the blood results for more information.

On a lighter note, my older, married friend and I were messing around yesterday (she is pregnant) with a fetal heartbeat monitor and other than hearing her baby's heartbeat (no heartbeat for ME!), we also found out that I have rusty hinges for joints! HAHAHA, actually that's a planned discussion next appointment... Some joints creaked horribly, others sounded like they popped out of place when I moved them. It was a bit scary.

Did your doctor refer you to an ear, nose and throat doctor to confirm that your balance issues are ear related? There is a disorder called gluten ataxia that effects balance. If the ENT says your ears are fine you might want to see a neuro if this doesn't resolve. A neurologist can diagnose gluten ataxia with an MRI which will show distinct white spots similar to the ones in MS. Of course the only thing they can do is tell you to be gluten free and sometimes a referral to a physical therapist who can help with balance issues.

In addition a doctor usually can't tell just by looking if a rash is DH. If it should come back a visit to a derm and a biopsy of the tissue next to the sores will tell you for sure.

Don't be too concerned about the creaky joints that you heard with the scope. You have a fluid inside your joints that lubricates them and will sometimes cause a popping noise. Like when someone cracks their knuckles. Go ahead and check it out but it is likley to be pretty normal.

I hope you start to feel better soon.

minton Contributor

He did not refer me to any doctors, but I will ask him next time about that. He did not biopsy the rash at all but he looked at the spots and told me that he has never seen DH or psoriasis act the way this rash has. The rash had begun to heal when he saw it and he said if it wasn't gone on its own or with the cream we would investigate further. So far no new spots!

Apparently the test he ordered that I don't recall included a vitamin D test (i think it was called a complete chem or something?) but they have to send the D test out to california and said it will take a minimum of ten days to recieve the results. They said all of the test results will be sent to them when all the tests are complete. And they will call me when they have the results. That will be February 2nd at the earliest. *waits anxiously* I will post the results as soon as I get them!

minton Contributor

Wow... test results cvame back. All my levels were normal except two. My potassium was low. it was 3.7 when it should be 3.8 at minimum (but its always been 3.7). And my vitamin D levels were 33, apparently my doctor wants them at 50. So tomorrow I am going hunting for a supplement (he wrote down the dose for me). And, since I mentioned it before, I should tell you all the blood pregnancy test was negative. Yay!


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    • trents
      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
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