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Self Diagnosis/new Doctors

teddylab

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teddylab Rookie
teddylab
Posted

Gosh, I am so sick of explaining myself to doctors! I have been to so many in the last few years it has done my head in!

After my last run in with one who refuses to look at anything but my blood pressure and pregnancy tests, I decided to just give up and take my own self diagnosis.

I gave up eating most gluten (a few things I wasn't aware of snuck in there!) and I felt GREAT. I haven't been blated or sick, I get up early and don't have trouble sleeping. No going to the toilet every half hour, and I have had so much energy.

I decided to try gluten again after 2 weeks to see if I had any reaction. The first day I was fine - the second day I was so so very sick. I had some of the worst stomach pains, and could not move. I was so bloated I felt like a helium balloon. I couldn't sleep and had terrible anxiety.

After all of this I plan on going gluten free, but first I am going to a celiac specialist I found close by. I am so excited and hopeful, I can't wait for my childhood GP to send me my referal!

I really hope that this will give me some closure, or at least point me in the right direction.

I'm also really scared - I hope this is the source of all my problems. What do you think?

medical background

* Failure to thrive - baby/infant

* Father also had failure to thrive for unknown reasons as a boy

* Small bowel biopsy as a baby revealed scoured/burnt villi

* Depression/anxiety caused by suspected chemical imbalances

* Joint problems including TMJ

* Constant stomach issues all my life - always put down to illness/flu

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MitziG Enthusiast
MitziG
Posted

I think you should have been diagnosed as a baby if you had blunted villi back then! Many here, including myself, can relate to your frustration of being dismissed byy doctors. I went through so many I began to wonder if maybe I just really WAS a hypochondriac. Since being dx with celiac my health has done a complete 360. I never dreamt I could just feel WELL! It keeps getting better too! You are definitely on the right track. Make sure you keep scarfing gluten until your tests are done though- for some, recovery cN happen too fast and mess up your tests!

teddylab Rookie
teddylab
Posted
  • Author

I think you should have been diagnosed as a baby if you had blunted villi back then! Many here, including myself, can relate to your frustration of being dismissed byy doctors. I went through so many I began to wonder if maybe I just really WAS a hypochondriac. Since being dx with celiac my health has done a complete 360. I never dreamt I could just feel WELL! It keeps getting better too! You are definitely on the right track. Make sure you keep scarfing gluten until your tests are done though- for some, recovery cN happen too fast and mess up your tests!

Thanks :) I find it amazing too that I wasn't diagnosed!

tom Contributor
tom
Posted

...

medical background

* Failure to thrive - baby/infant

* Father also had failure to thrive for unknown reasons as a boy

* Small bowel biopsy as a baby revealed scoured/burnt villi

* Depression/anxiety caused by suspected chemical imbalances

* Joint problems including TMJ

* Constant stomach issues all my life - always put down to illness/flu

Don't forget

* Changes from recent 2wks gluten-free & reaction from 2 days gluten challenge.

It's part of the medical history now.

Good luck w/ the doc!

teddylab Rookie
teddylab
Posted
  • Author

Don't forget

* Changes from recent 2wks gluten-free & reaction from 2 days gluten challenge.

It's part of the medical history now.

Good luck w/ the doc!

Thank you, I'll make sure to include it!

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  • Recent Activity

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      - trents replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      Small Bowel Resection 12 inches

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      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
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    • trents
      Small Bowel Resection 12 inches

      By trents · Posted

      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
      Small Bowel Resection 12 inches

      By Ello · Posted

      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
      Small Bowel Resection 12 inches

      By trents · Posted

      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
      Small Bowel Resection 12 inches

      By Ello · Posted

      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
      Small Bowel Resection 12 inches

      By trents · Posted

      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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