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Worried


Graeme1

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Graeme1 Newbie

Hi everyone 

Just thought I’d post an update after finally getting answers on what has been going on for me . After having continued problems with blood in my poo (sorry) and seeing 5 different gps in my practice to try and explain I felt it needed further investigation I was still being fobbed off . I had my appointment for an endoscopy on Jan 9th , which I’ll be completely honest I didn’t eat gluten for due to still feeling poorly while being gluten free and not wanting to feel worse. While at the endoscopy I voiced my fears to the consultant about my worries with my bowels and while still telling me it was nothing agreed to send me fit tests , these came back positive and I was put on the urgent referral 2 week pathway and to be fair got my colonoscopy within a week and a half . 
This found a 25mm polyp which was removed and sent to be checked , I got my results this week and even without gluten my biopsies showed signs of celiac so nice to have that answer , and the polyp was ok so another colonoscopy in 3 years due to the size of it I think, and all bleeding has now stopped. Very relieved to have answers to everything now but a bit disappointed in my gps and feel validated for pushing them just a bit unfortunate I had to play the system to get checked , but if I had waited 3 years to reach 50 and in the age group for bowel cancer checks the results of my colonoscopy may have been very different.I’d like to thank everyone for there kind words of advice.it helped a lot as I was pretty stressed!


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herminia Apprentice
On 12/12/2022 at 2:17 AM, Graeme1 said:

Hi I’m new to site and hoped that speaking to others would help . I had been bothered with symptoms abdominal bloating , acid reflux and intermittent bloody stool (sorry!) for a couple of months , went to the doc who did bloods and also a celiac test as my son is celiac , bloods came back fine apart from celiac which was raised , I have given up gluten for 1.5 weeks and notice improvement but still bloating sometimes, it is the blood I’m worried about though , I have convinced myself I have cancer , I was hoping someone here might have experience or advice. I have pushed the doctor but not much happening. 
thanks

Perhaps a 2nd opinion?

My first gastro doc did an endoscopy and told me I had pancreatitis, could not be cured, only managed and my liver was damaged also (I haven't had an alcoholic drink in 12 years) She made it sound like a death sentence. I requested second opinions for liver and pancreas. Hepatologist & gastroenterologist agreed that I had a liver cyst but no pancreas issues.

For your own peace of mind get a second opinion.

trents Grand Master

herminia, they must have done an endocopy (upper GI scoping) at the same time they did the colonoscopy. Celiac disease damages the lining of the small bowel, an area that cannot be reached by a colonoscopy. To scope and biopsy the small bowel they must go down through the mouth, esophagus, and stomach into the small bowel. But we are glad with you that you finally got some answers.

MADMOM Community Regular
15 hours ago, trents said:

herminia, they must have done an endocopy (upper GI scoping) at the same time they did the colonoscopy. Celiac disease damages the lining of the small bowel, an area that cannot be reached by a colonoscopy. To scope and biopsy the small bowel they must go down through the mouth, esophagus, and stomach into the small bowel. But we are glad with you that you finally got some answers.

when you say bloody stools.. is it blood around the stools or in ??? you could have internal or external hemorrhoids.  i’ve had this issue lately since suffering from major constipation after a kidney stone episode 

herminia Apprentice
45 minutes ago, MADMOM said:

when you say bloody stools.. is it blood around the stools or in ??? you could have internal or external hemorrhoids.  i’ve had this issue lately since suffering from major constipation after a kidney stone episode 

Madmom..Your reply was meant for Grame1. She posted that she had bleeding taking place and didn't feel comfortable with Dr diagnosis. I suggested she get second opinion. I'm new on site and haven't mastered procedures.

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    • trents
      Did the symptoms commence after you discontinued the AIP diet? Have you checked all nutritional supplements and oral hygiene products for possible gluten content? Have you recently checked all the labels of purchased processed foods in your pantry to check for formulation changes that might have introduced gluten? Historically, when "glutened" did you have GI symptoms or were you a "silent" celiac whose symptoms were non GI. Is what you are experiencing now like what you were experiencing at the time of diagnosis? Have you had recent blood work done (CBC and CMP) and if so, were there any parameters out of norm? I know you have Hashimoto's but you say that is well controlled now? It certainly wouldn't hurt to get celiac antibodies rechecked. Because you are essentially gluten free I would not expect to see any big departures from normal levels but if there are even weak positives it could indicate you are getting glutened from some unexpected source.
    • Maura Gissen
      Hi Trent! Thanks so much for your warm welcome and questions! They do, but these symptoms have been ongoing for a long time before the pregnancy. However, it's hard for me to know what's a celiac response vs. a Hashimotos one. I haven't, maybe it's worth getting those checked again? 
    • trents
      Welcome to the forum, @Maura Gissen! Don't those same symptoms often come along with the territory when pregnant? And then throw in Hashimoto's.  Have you had your celiac antibody levels checked recently?
    • Maura Gissen
      Hi! I have been diagnosed with celiacs and hashimotos for about 1.5 years. I have been on a gluten-free diet since then, and was on a strictly AIP diet for about 6 months a while back. I'm now pregnant, making food eliminations really hard. However, even with cutting out gluten and cross-reactive foods like corn, dairy, oats and yeast, I'm still having flare ups and I cannot pinpoint the foods (some weeks I am fine, others not so much). My symptoms are less digestive and more dizziness, brain fog, and a general feeling of being "sick." Can anyone relate? Does anyone have guidance? I feel really stuck and frustrated. 
    • trents
      The form of the magnesium is important. Go for one that has high absorbability. Most of us opt for magnesium glycinate. Mag citrate is also good. Don't settle for the oxide forms. They aren't absorbed well and tend to have a laxative effect 'cause they just draw water into the colon a' la Milk of Magnesia. Costco is a good place to shop for things like that. Also, good bone and dental health involves vitamin D. Are you taking a dedicated D3 supplement? Have you had your D levels checked? In many ways, vitamin D is turning out to be a master vitamin of human metabolism and celiacs are often low on this one. What was the numerical score on your IGA along with the reference range? I can probably tell you whether it was TTG-IGA by the magnitude of the score. The only other likely option besides TTG-IGA would be Total IGA which usually has scores that range in the hundreds.  I do think it important for you to get a follow-up endoscopy/biopsy to check for healing of the villi. If that isn't happening like it should, you still are not absorbing nutrients well and that could easily explain your dental issues.
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