Worried

[Graeme1]

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

[trents]

Welcome to the forum, Graeme1!

More than likely, you are still getting some gluten occasionally. Learning to eat truly gluten free is a challenge. This might help:

It is also quite common for celiacs to develop intolerance to non-gluten foods such as dairy, oats and eggs, but not limited to those.

[Scott Adams]

If you were just diagnosed with celiac disease, which isn't 100% clear from your post, it will take much longer than 1.5 weeks for your symptoms to go away, and for you to recover. 

[Graeme1]

Hi Trent’s , Scott thanks for your replies. I haven’t been officially diagnosed yet but I’m in the uk and the wait for a GI appointment could be long . So being that my son has been diagnosed I have made the decision to remove gluten at least until I get an appointment. With regards the symptoms  I understand that things could take months but it is the blood in my stool that is concerning me , I’m sure it’s probably hemarroid or fissure but have just got myself in a panic to be completely honest . I can’t find a great deal about this being a symptom of celiac and have started catastrophising a bit . 

[Scott Adams]

Given that your son has it, at least one Mayo Clinic study indicates that you have a 44% chance of also having it, and given your symptoms it does seem likely.

[cristiana]

Hi Graeme

"With regards the symptoms  I understand that things could take months but it is the blood in my stool that is concerning me , I’m sure it’s probably hemarroid or fissure but have just got myself in a panic to be completely honest . I can’t find a great deal about this being a symptom of celiac and have started catastrophising a bit ."

 

We are so conditioned to think that blood in stool must mean something very sinister that it is hard not believe it is anything than cancer.  I've been there, too, thinking the worse.  In my case the bleeding it was caused by a fissure caused by diarrhea which was made all the worse by copious amounts of iron, prescribed to me because I was anaemic. 

I assume your doctor is aware? If not, make sure they know, it is importannt, but chances are it is a fissure or piles which may be visible with just a quick digital examination in the GP's office, without going any further.  My doctor discovered my fissure this way (sorry if that's TMI!)  I found that within a month of my diarrhea subsiding the bleeding stopped. 

Cristiana

Edited December 12, 2022 by cristiana

[Wheatwacked]

14 hours ago, Graeme1 said:

I have convinced myself I have cancer

Natural tendency to fear worst case. So many on this forum were misdiagnosed only to learn it was Celiac Disease all along. To really get a scare look up "200 symptoms of Celiac Disease". It can mimic anything because of autoimmune response and vitamin deficiencies.  

Once you start GFD and or correcting malnutrition you start healing so you will need to do a Gluten Challenge to continue testing. They call it "Catch 22". You need to stay sick to get the right diagnosis.

As you heal you will experience various food issues that will eventually pass. Make sure to replace the vitamin and minerals intake lost when you do. Also any caused by diet choices. Prominent are iodine, choline, potassium. Vitamin D is king of the autoimmune system.

I did have blood in my stool and it has passed.

Between the vitamin deficiency and irritation bloating diahrea and constipation and pushing it only makes sense. Do not think of vitamins and minerals as supplements but rather as concentrated food tablets because you can't get enough of them in regular food. The Recommended Dietary Allowance listed on labels are the minimums a healthy person should eat to stay healthy. You need to shoot for somewhere between the minimum and the RDA safe upper limit.

 

[cristiana]

Funny you should mention this @Wheatwacked.  I'd forgotten that list - and there are others, and yet in the early days I think I must have looked at it dozens of times for reassurance.   

Before I was diagnosed my doctor told me they were looking for cancer.  I had curious blood test results which showed a strange blood protein spike that concerned my GP.  She was right to do so but everytime this spike showed she ordered more tests, which really added to the anxiety levels (I'm a hypochondriac).  Yet by the time I saw my gastroenterologist who has seen probably many hundreds if not thousands of coeliacs in his career, he didn't bat an eyelid - "Ah, yes, we see this from time to time in coeliacs". 

Edited December 13, 2022 by cristiana

[Rogol72]

10 hours ago, Wheatwacked said:

Natural tendency to fear worst case. So many on this forum were misdiagnosed only to learn it was Celiac Disease all along. To really get a scare look up "200 symptoms of Celiac Disease". It can mimic anything because of autoimmune response and vitamin deficiencies.  

Once you start GFD and or correcting malnutrition you start healing so you will need to do a Gluten Challenge to continue testing. They call it "Catch 22". You need to stay sick to get the right diagnosis.

As you heal you will experience various food issues that will eventually pass. Make sure to replace the vitamin and minerals intake lost when you do. Also any caused by diet choices. Prominent are iodine, choline, potassium. Vitamin D is king of the autoimmune system.

I did have blood in my stool and it has passed.

Between the vitamin deficiency and irritation bloating diahrea and constipation and pushing it only makes sense. Do not think of vitamins and minerals as supplements but rather as concentrated food tablets because you can't get enough of them in regular food. The Recommended Dietary Allowance listed on labels are the minimums a healthy person should eat to stay healthy. You need to shoot for somewhere between the minimum and the RDA safe upper limit.

 

@Wheatwacked, I assume the Celiac Risk column refers to the risk of deficiency in untreated Coeliac Disease?

[cnazrael89]

On 12/12/2022 at 12:44 PM, Graeme1 said:

 I understand that things could take months but it is the blood in my stool that is concerning me , I’m sure it’s probably hemarroid or fissure but have just got myself in a panic to be completely honest . I can’t find a great deal about this being a symptom of celiac and have started catastrophising a bit . 

I was diagnosed via blood/biopsy 10/24/2022 and one very annoying symptom I had been dealing with for about five plus years was anal fissures. Tried lots of different creams, suppositories, etc. but nothing would ever really help and if it did help, it didn't last. Before I was diagnosed, I did bring up the fissures at my GI consultation but she didn't give any insight as to whether or not it was related to Celiac. After my diagnosis, I had a GI appointment and the same GI doc told me now that I had an official Celiac diagnosis, she told me the fissures were related to Celiac. She prescribed me a special Nitroglycerin ointment that had to be compounded at a specific pharmacy. The Nitroglycerin was to be placed on the fissures 3x/day for 2 weeks to allow better blood flow to the area to aide in healing. She said that with the Nitroglycerin cream and being gluten free my fissures should be able to heal. I'd say, within the first 5 days of gluten free and doing the cream I had near complete relief from pain/inflammation down there and no more blood when I wipe (After 5+ years of suffering from this!!!!). Fissures have been mostly better since then, minus the 2x I have accidently ingested gluten in hidden ingredients and the very next day after ingestion I was having problems with the fissure areas again (pain, itching, bleeding). I used the cream for several days after each incident with gluten and again my fissure symptoms have resolved....I had other symptoms with both of those accidental gluten exposures like headache, fatigue, bloating, gas pain, etc. but I'm curious if I will have anal fissure flare ups each time I'm exposed to gluten....time will tell. I hope this was helpful and I know it is way TMI but seemed pertinent to the topic and I hope it is useful to someone out there. Take care!

[cristiana]

That's a great post, @cnazrael89.   I'd say the important thing to do here , @Graeme1 ,  if you haven't already done so, is to ensure you mention this to your doctors, and get them to check this is what you are dealing with.   

[Sabaarya]

On 12/12/2022 at 12:17 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

Hi Graeme,

I was diagnosed with celiac last year. I was having bunch of symptoms and one of them was anemia and very low ferritin level. I got concerned about that and had my doctor to check my stool. They found occult blood in my stool and my doctor wanted me to have colonoscopy. I was terrified and was thinking that it was cancer. That was so scary. Had endo and colonoscopy. My colon was clear but doctor said that I do have red spots in my duodenum which is the first part of small intestine and gastritis. After biopsy result I was told that I have celiac even though blood work for celiac was negative. It’s been 16 months of gluten-free diet I feel better but still have occasional symptoms. Will have repeat endoscopy on Tuesday  after my initial diagnose and very anxious. Anyways don’t be concerned about blood,it’s probably nothing serious and trust me 1.5 weeks of gluten-free diet is nothing. You might start to feel better after 6 months of gluten-free diet and it will take time…

Saba

[trents]

6 hours ago, Sabaarya said:

Hi Graeme,

I was diagnosed with celiac last year. I was having bunch of symptoms and one of them was anemia and very low ferritin level. I got concerned about that and had my doctor to check my stool. They found occult blood in my stool and my doctor wanted me to have colonoscopy. I was terrified and was thinking that it was cancer. That was so scary. Had endo and colonoscopy. My colon was clear but doctor said that I do have red spots in my duodenum which is the first part of small intestine and gastritis. After biopsy result I was told that I have celiac even though blood work for celiac was negative. It’s been 16 months of gluten-free diet I feel better but still have occasional symptoms. Will have repeat endoscopy on Tuesday  after my initial diagnose and very anxious. Anyways don’t be concerned about blood,it’s probably nothing serious and trust me 1.5 weeks of gluten-free diet is nothing. You might start to feel better after 6 months of gluten-free diet and it will take time…

Saba

@Sabaarya, exactly what antibody tests were done initially that were negative? Just the tTG-IGA or a more complete celiac panel? Also, you've been attempting to eat gluten free long enough now that if you are still having occasional symptoms, it might be a good idea to have another biopsy done to check for compliance and healing of the villi. Studies show that most people who believe they are eating gluten free are actually eating lower gluten.

[Sabaarya]

12 hours ago, trents said:

@Sabaarya, exactly what antibody tests were done initially that were negative? Just the tTG-IGA or a more complete celiac panel? Also, you've been attempting to eat gluten free long enough now that if you are still having occasional symptoms, it might be a good idea to have another biopsy done to check for compliance and healing of the villi. Studies show that most people who believe they are eating gluten free are actually eating lower gluten.

Hi Trents. Yes just 2 antibodies,I’ve shared my results here. Tuesday is my endoscopy day and I’m very anxious but I have to do it. A year ago doctor said that the damage is mild and it should be resolved in 3 months. My problem is that I do eat a lot and also all gluten free snacks,like chips,toritillas,cookies,chocolate and Since I do have stomach issues as well I don’t know if my symptoms pertain to my chronic gastritis or celiac. I do have stomach issues since I was 16 years old. But overall my neurological symptoms which was related to Celiac has been resolved,all my blood levels and vitamin levels in normal ranges now,I don’t have back pain anymore,I don’t have feet pain anymore,my mouth ulcers got much better, no ear buzzing,no hand tingling,my hair got thicker.Will see…

Saba

[Scott Adams]

Let us know how things go, and good luck!

[Sabaarya]

38 minutes ago, Scott Adams said:

Let us know how things go, and good luck!

Will do! Thanks

[Sabaarya]

On 12/19/2022 at 11:29 AM, Scott Adams said:

Let us know how things go, and good luck!

Hi Scott. Have received my pathology  today and I got healed:))). It states that Duodenum mucosa shows no pathologic abnormality,no blunting, no intraepithelial lymphocytes,no diagnostic evidence of celiac sprue seen. I’m happy:)

Saba

[trents]

Good news! Thanks for sharing.

[Scott Adams]

That's great news, and keep up the fight to stay gluten-free, as it is an ongoing daily battle!

[Sabaarya]

4 minutes ago, Scott Adams said:

That's great news, and keep up the fight to stay gluten-free, as it is an ongoing daily battle!

I know:)

[Graeme1]

Hi everybody, hope you all had a great Christmas, . Sorry I haven’t replied to thank everyone for their advice . With regards what I have told my doctor they are aware of the blood, and did a digital exam which was clear but she did say it could be internal hemi which she couldn’t feel , I have an appointment in 2 weeks for endo she also said she mentioned the blood in the referral so I will push for answers when I see the GI . It is a very small amount of blood so hoping nothing serious and trying not to worry! 
 

[cristiana]

Hi Graeme

Good to hear from you.     We hope you had a good Christmas too.   

Well done for getting checked out, there is a good chance all will be well but always best to be sure.  It sounds like you are being looked after well.  

Take care, and do keep us posted.

Cristiana

 

[MADMOM]

On 12/22/2022 at 4:43 AM, Sabaarya said:

Hi Scott. Have received my pathology  today and I got healed:))). It states that Duodenum mucosa shows no pathologic abnormality,no blunting, no intraepithelial lymphocytes,no diagnostic evidence of celiac sprue seen. I’m happy:)

Saba

wow that’s so great!  i’m planning a follow up endoscopy in march - it’s been 25 months now i’ve been gluten free and my last blood work this past sept were so great!  my GI dr says my celiac levels are undetectable !   how long has it been since your first endoscopy?  

[MADMOM]

On 12/26/2022 at 9:44 AM, Graeme1 said:

Hi everybody, hope you all had a great Christmas, . Sorry I haven’t replied to thank everyone for their advice . With regards what I have told my doctor they are aware of the blood, and did a digital exam which was clear but she did say it could be internal hemi which she couldn’t feel , I have an appointment in 2 weeks for endo she also said she mentioned the blood in the referral so I will push for answers when I see the GI . It is a very small amount of blood so hoping nothing serious and trying not to worry! 
 

i recently see blood when i poop but mainly when i’m pushing hard or am constipated!  it’s never when i have a regular soft bowel movement!  i also feel like it might be an internal hemorrhoid bc at times it feels irritated and itchy / i had a colonoscopy 2 years ago at 48 and all was fine - epsom salt baths help as well as topical ointments - 

[Sabaarya]

1 hour ago, MADMOM said:

wow that’s so great!  i’m planning a follow up endoscopy in march - it’s been 25 months now i’ve been gluten free and my last blood work this past sept were so great!  my GI dr says my celiac levels are undetectable !   how long has it been since your first endoscopy?  

Hi. It’s been 16 months…