Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

So Grateful For Years Of Painful Symptoms - Really!

gf-soph

By gf-soph
in Related Issues & Disorders

Recommended Posts

gf-soph Apprentice
gf-soph
Posted

I just got back from a follow-up appointment with my gastroenterologist, who conducted an endoscopy and colonoscopy a month ago to check for Crohn

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


conniebky Collaborator
conniebky
Posted

I think that's wonderful. :)

Looking for answers Contributor
Looking for answers
Posted

Hi,

I'm so happy to hear this news for you. It's great that you're so proactive about your health at such a young age, and it definitely has paid off.

Years ago I read a book by Jordon Rubin. He's the maker of the Garden of Life supplement line. I can't remember how I stumbled across his book (If I remember right, it was called The Maker's Diet). Anyways, he had Chrohn's disease and cured it through his diet - gluten free and dairy free, etc. I don't know why but when I read your posting I thought of it...you might want to skim through it to see if it may help you with your ongoing issues.

Open Original Shared Link

I can tell you that probiotics and enzymes have helped me greatly. I take them with every meal. I highly recommend them if you're not already taking them.

Good luck to you. Whatever you do now while you're young is sure to ward off future issues.

bluebonnet Explorer
bluebonnet
Posted

that's awesome!!!! :) even though you still have issues, you must feel gratitude, relief and peace of mind now for sure! my gi doc said to try the probiotic brand "align". its realllllly pricey though ... $28 for 1 pack, so basically 1 buck per pill! but probiotics do help, so maybe they can offer your "ibs" a little relief.

  • 2 weeks later...
wrench Newbie
wrench
Posted

Oh great, now I'm scared that I'll have bowel cancer at 25!

Only sort of kidding. Good that they got it so early.

gf-soph Apprentice
gf-soph
Posted
  • Author

thanks for the suggestions - I will look in to it. The pain is that the testing hasn't given me a direction for future diet, this is the result of a process that started in October last year when I started an elimination diet and got worse!

I have been back to see my dietician and we are trying a low chemical diet (low in amines, salicylates and glutamate) to see if that helps the nasty brain fog - I can deal with almost everything except the damn fog! My irritation about another round of (possibly useless) diet restrictions is pretty strong at the moment, but the recent events has helped me get some perspective!

anabananakins Explorer
anabananakins
Posted

Wow, I am SO glad you have been pursuing all these tests! That is fantastic that they caught it now (ok, better not to have found anything at all but given the all too likely other possibility, a huge relief!)

It's making me think maybe I should ask for a check up. My dad gets checked for polyps because his mother had them but I wasn't too worried because I'm only 33 (and it wasn't a procedure I was rushing to have). But if they found them in a 25 year old...

Sharing stories like this is really useful - I think it makes people more proactive. A colleague was diagnosed with breast cancer a few years ago, they caught it really early and she's doing fine. And she said what she went through was worth it if it meant even just one person she knew started checking more carefully because of it.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Gemini Experienced
Gemini
Posted

Wow, I am SO glad you have been pursuing all these tests! That is fantastic that they caught it now (ok, better not to have found anything at all but given the all too likely other possibility, a huge relief!)

It's making me think maybe I should ask for a check up. My dad gets checked for polyps because his mother had them but I wasn't too worried because I'm only 33 (and it wasn't a procedure I was rushing to have). But if they found them in a 25 year old...

Sharing stories like this is really useful - I think it makes people more proactive. A colleague was diagnosed with breast cancer a few years ago, they caught it really early and she's doing fine. And she said what she went through was worth it if it meant even just one person she knew started checking more carefully because of it.

While I am the last person who would intentionally try to scare anyone on a health related issue,

anyone who develops a polyp which is pre-cancerous at such a young age ought to be gene tested for one of the colon cancer genes. It is very common to see polyps and pre-cancerous lesions in someone who carries the gene and not for someone who doesn't. The vast majority of colon cancer happens in older people....past 60 years old and even older. When you see these problems in anyone under 60, it could mean you have a genetic pre-disposition to them. If your parents or family members are prone to polyps, then those are the people who should be tested and screened.

For the general population, with no family history of cancer/polyps, screenings should be an option, unless you want to be screened. Doctors don't pay enough attention to genetics and

sometimes push screenings that are unnecessary at younger ages.

Celiac Disease does not put you at higher risk for colon cancer....unless you aren't diagnosed and keep on eating gluten and being sick. I don't think there has been a direct link studied but I shudder to think what my colon would be like if I hadn't been diagnosed! :blink:

anabananakins Explorer
anabananakins
Posted

It is very common to see polyps and pre-cancerous lesions in someone who carries the gene and not for someone who doesn't. The vast majority of colon cancer happens in older people....past 60 years old and even older. When you see these problems in anyone under 60, it could mean you have a genetic pre-disposition to them. If your parents or family members are prone to polyps, then those are the people who should be tested and screened.

That's interesting, thank you. I confess to being pretty 'head in the sand' about it. I will tell my GP my family history and ask about the gene.

I'm not diagnosed celiac but when the tests came back negative I went gluten free because I knew it made me feel bad - and I feel so much better.

gf-soph Apprentice
gf-soph
Posted
  • Author

My dad and his sister are already over 50, so both have had colonoscopies that came up clear. I spoke to my GP and she did confirm that my sister (26) needs a colonoscopy now as she has a higher risk of these polyps, and we have also informed my cousins as they may have a higher risk too.

From what I know, there are 2 main conditions where someone my age would get these polyps. One causes hundreds of polyps, so clearly not my issue. The other is characterised by several first or second degree relatives with bowel cancer or early polyps. I have a very small family, especially on my dad's side, so it may be if there were more family members that pattern would show up, but who knows. If you have a big family pattern, I would speak to your GP about it.

I'm glad that I have a GP that I trust, so I'm sure if there was something I should know she will tell me. She doesn't totally pander to me, but she is prepared to take my concerns seriously. I will admit I am a bit concerned that whatever caused that polyp may not just be an isolated problem, as they found an unidentified dark spot in my liver about 6 months ago (could be nothing, might not be). I will be getting a repeat ultrasound to make sure it hasn't grown. I don't expect it to be a problem, but I will be happy to have it confirmed that it's the same size! The challenge will be not turning into a hypochondriac now!

Gemini Experienced
Gemini
Posted

My dad and his sister are already over 50, so both have had colonoscopies that came up clear. I spoke to my GP and she did confirm that my sister (26) needs a colonoscopy now as she has a higher risk of these polyps, and we have also informed my cousins as they may have a higher risk too.

From what I know, there are 2 main conditions where someone my age would get these polyps. One causes hundreds of polyps, so clearly not my issue. The other is characterised by several first or second degree relatives with bowel cancer or early polyps. I have a very small family, especially on my dad's side, so it may be if there were more family members that pattern would show up, but who knows. If you have a big family pattern, I would speak to your GP about it.

Many Celiacs have liver related issues before they are diagnosed and I would bet that yours will go away if you follow the diet strictly. I had elevated liver enzymes but no longer, since I started the diet. I would bet there is a connection for you.

I'm glad that I have a GP that I trust, so I'm sure if there was something I should know she will tell me. She doesn't totally pander to me, but she is prepared to take my concerns seriously. I will admit I am a bit concerned that whatever caused that polyp may not just be an isolated problem, as they found an unidentified dark spot in my liver about 6 months ago (could be nothing, might not be). I will be getting a repeat ultrasound to make sure it hasn't grown. I don't expect it to be a problem, but I will be happy to have it confirmed that it's the same size! The challenge will be not turning into a hypochondriac now!

Many Celiacs have liver related issues before they are diagnosed and I would bet that yours will go away if you follow the diet strictly. I had elevated liver enzymes but no longer, since I started the diet. I would bet there is a connection for you.

I would ask about being screened for the gene for colon cancer. That will give you a lot of information with regards to screening. Polyps in anyone under 60 and in family members at a younger age is not common. I know in the US the doctor would screen for that if a patient expressed interest in knowing. It's good information to have. I am glad that everything worked out so well for you and if you stay gluten-free, things will improve and then maybe you won't have these worries.

katyd1d Newbie
katyd1d
Posted

Congratulations on such a fortuitous discovery! It's maybe a strange thing to celebrate, but valuable just the same.

I am constantly looking for silver linings (how nice it will be to have a diagnosis if I have Celiac, and how much healthier I will eat, if I turn out to really have it, which might get me into the healthier lifestyle I've been meaning to follow). But your silver lining (no diagnosis, but here, get rescued from the deadly threat you didn't know about) is super shiny!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,919
    • Most Online (within 30 mins)
      7,748
    globello
    Newest Member
    globello
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      Newly diagnosed mam to coeliac 11 year old

      By trents · Posted

      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Newly diagnosed mam to coeliac 11 year old

      By Dizzyma · Posted

      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
      Fermented foods, Kefir, Kombucha?

      By xxnonamexx · Posted

      very interesting thanks for the info  
    • Florence Lillian
      gluten free cookie recipes

      By Florence Lillian · Posted

      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
    • Russ H
      Severe severe mouth pain

      By Russ H · Posted

      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting in the mouth corners, and dry mouth to name but some. The link below is for paediatric dentistry but it applies to adults too.  Have you had follow up for you coeliac disease to check that your anti-tTG2 antibodies levels have come down? Are you certain that you not being exposed to significant amounts of gluten? Are you taking a PPI for your Barrett's oesophagus? Signs of changes to the tongue can be caused by nutritional deficiencies, particularly iron, B12 and B9 (folate) deficiency. I would make sure to take a good quality multivitamin every day and make sure to take it with vitamin C containing food - orange juice, broccoli, cabbage etc.  Sebaceous hyperplasia is common in older men and I can't find a link to coeliac disease.   Russ.   Oral Manifestations in Pediatric Patients with Coeliac Disease – A Review Article
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.