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

Celiac And Colon Polyps

natalieb

By natalieb
in Related Issues & Disorders

Recommended Posts

natalieb Rookie
natalieb
Posted

Hi, I am 39 years old and very new to celiac but not new to living with autoimmune disorders, ie, thyroid disease. At around 32 I began experiencing what my gi doc told me was colitis. He then did a colonoscopy which showed that I had collangenous colitis. During that time I went from an energetic career woman to someone with numbness in her fingers, lethargy, colitis, pain in the upper left quadrant of my stomach, irritability, and severe leg pain. At 38, he did another colonoscopy and found an adenoma, it was benign, thank god, but I am terrified. After that I began listening to my inner self and got a hold of a doc at presby hosp in pgh. He was thorough and asked me every question under the sun unlike this other piece of work who put his kids through college by doing colonoscopies. Sorry but I can't contain my anger towards this highly regarded doc who couldn't do a simple blood test. Well, the doc at presby tested me for celiac and low and behold I had it. I am curious if there is anyone out there who has had colon polyps as well. I am so scared. Next May I will have another colonoscopy to see if any have dev. Is there anyone out there with these similarities? I have found no link whatsoever in what I have researched thus far. Help. Thanks, Natalie

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

Celiac.com Sponsor (A8-M):


gf4life Enthusiast
gf4life
Posted

Hi Natalie,

Unfortunately, most doctors are like the first one you mentioned. I had never heard of Celiac or gluten, after 30 years of seeing dozens of doctors for GI related problems. Then when I came acrossed it one day and it sounded like me I asked for testing, and at first it seemed no one knew what tests to order, then they ordered the wrong ones, then when I finally got the right ones ordered(I had to take a list of tests in to my doctor so he knew what to order!) they came back negative. But long story short, more testing showed I did in fact have celiac disease and am much better off for knowing. I have already suffered too long, but should be able to heal, my children won't have to suffer so long.

Now as for the colon polyps, I did not have any during my recent colonoscopy (Thank God), but it is not uncommon to find in an undiagnosed celiac. Now I assume you are on the gluten free diet? So you should be feeling somewhat better, right. I would like to say that you will not have any more polyps, but I just don't know. I do know that you reduce your risk of developing intestinal cancer by staying 100% gluten free. So it is good that you be gluten-free, and good that your doctor recheck you in May, but it is not good for you to dwell on the thought of developing more polyps, or of it turning into cancer. It sounds like you have a great doctor and as long as you take care of yourself, then you are doing the best you can. The rest is in God's hands. I am glad you are here at this site. There are a lot of supportive people here and we are all in the same boat.

God bless.

Mariann :wub:

(my daughter really wanted me to use the heart smiley!)

angel-jd1 Community Regular
angel-jd1
Posted

I don't know of a link between polyps and Celiac. It might be interesting for someone to research. I personally have diverticulitis. I also wonder if that has something to do with celiac.

-Jessica B)

wclemens Newbie
wclemens
Posted

My father died of colon cancer, and so did his brother. My sister, brother, and I have all had colon polyps removed, none cancerous Thank God. I am the only one who has been on a gluten free diet, and I got a lot more serious about being careful to totally stay away from all gluten, milk, dairy, egg whites and yeast, which I am allergic to, after my colonoscopy.

The theory is that if my dad and his brother had been tested soon enough they would have been able to have the polyps removed without cancer developing.

You are wise to be concerned, and I feel that adhering strictly to a diet consistent with what you can tolerate (after of course learning what those foods are, and the list may be longer than what you think now) will certainly lessen your anxiety and apprehension.

Katie Couric is on such a campaign to rid this country of colon cancer, and my sister was so persistent that my brother and I went for testing. I had experienced colitis for years. I hope you find your path to good health and peace of mind. Please listen to what your body is telling you to avoid, and as the other writer mentioned, we are in God's Hands. He is faithful to help us each day. Welda

lucycampbell55 Rookie
lucycampbell55
Posted

I also had polyps found when they did my colonoscopy. None malignant. Thank God

I'm so new to celiac disease that I can offer no help as far as research is concerned. I just found out in November and what I have learned about the disease has come from the internet.

I have suffered indigestion problems for the last 30 years and got tired of being told they couldn't find anything, so I stopped complaining and just dealt with it the best I could. Since being diagnosed and going 100% gluten-free I have done fine. I am on medication for the damage to my stomach because of not being diagnosed sooner but have been told that If I stay 100% gluten-free my stomach will heal. It's just a matter of time.

Lucy

Guest ellcrys11
Guest ellcrys11
Posted

I had a colonoscopy in Jan of 2002. I had two polyps. One was ok but the other was precancerous. Both were remove. I was diagnosed with celiac disease in June of 2002. I feel real lucky that the dx was made. It has made my life simpler by going gluten-free but I don't get as sick any more.I would not go back to eating gluten if they paid me.

God Bless Everyone

Harriet

clare Newbie
clare
Posted

One of the MANY tests I have had in the past four years in an attempt to diagnose my miscellaneous digestive complaints was a colonoscopy. The doctor found an unusual growth that didn't look like anything he had ever seen before, but which he assured me wasn't a polyp. In my followup colonoscopy two months before my diagnosis, there were two of these growths. I am supposed to go back in about 6 months to have them removed so I'm curious to see what the doctor will find this time now that I have been following a gluten-free diet...

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

Celiac.com Sponsor (A8-M):


  • 3 weeks later...
DawnM Newbie
DawnM
Posted

Hi: I am wondering if my Mother in Law has undiagnosed Celiac Disease. She often complains of constipation. She was recently diagnosed with anal/rectal cancer. I asked my Mother in Law to be tested for celiac disease since it is a hereditary disease. She does not feel that it is necessary because she does not think she has it. I am praying that if she does have celiac disease, that the Dr.'s will do the testing, just to be thorough.

My sister in law also complains of stomach problems,pain, diarreah, the whole nine yards. She also refuses to be tested. She has had kidney stones, gall bladder removed and a hysterectomy. She is only 43 years old.

I HOPE neither has celiac disease, however, my son's diagnosed celiac disease had to come from somewhere!!! Anyone have any thoughts or recommendations to get them to be tested? Thank you.

seeking-wholeness Explorer
seeking-wholeness
Posted

Dawn, I know how frustrating it is to have relatives brush off your concern for them! It's infuriating sometimes. The only wisdom I have to offer is frustrating in and of itself: remember that THEY are responsible for their own health! Once you have shared your concern with them (which you are totally within your rights to do), it is important to give them LOTS of time and space to process and consider what you have said. Sometimes, it will stick in the back of their minds and resurface months or even years later--when they are better equipped to approach the topic again. That said, I have heard that the latest issue of Reader's Digest has an article on diseases that are difficult to diagnose, including celiac disease. Giving your relatives a copy of the magazine or article may be a good way to broach the subject and lend credibility to your concerns. Good luck!

natalieb Rookie
natalieb
Posted
  • Author

Dawn,

How old is your son with celiac disease? I understand what it is like to have this situation as when I was diagnosed with celiac disease my doc told me to have my 9 yr. old tested as well due to the fact that she displays some classic symptoms. The test came back negative, but I noticed when she is gluten-free she does much better. anyhow, when I told my mother in law that I was going to have her tested she thought that I was out of my mind. In dealing with this, I have discovered that there are so many people out there who do not take this as a bonafide serious disease. It is a shame. Maybe that is part of the reason that they turn the other ear. Perhaps collecting as many articles on the subject, (Womans Day has an article about it as well in their Feb 17th edition), and presenting it to them. You will then have done all you can and must worry about your son. Obviously he got it from their side if your side of the family has no history due to the high genetic link. This disease however, still remains something that is in the dark. I actually had a friend tell me that once I healed my stomach that I could go back to have "a little" gluten here and there and guess what? She is a reg. nurse and has been for 18 years! Good luck. Remember though, you can only do so much and then guess what? It is up to them, they are big girls. Take Care. Natalie

  • 9 years later...
wartburg03 Rookie
wartburg03
Posted

I recently self diagnosed a gluten sensitivity and have been gluten free for 2 months. I waited until my celiac bloodwork came back negative but then went gluten free anyway. 2 days ago I had an upper endoscopy but I don'tknow if my biopsies would show celiac at this point even if I had it. I also had a colonoscopy (I'm a 32 yo female, not normally high risk, but my brother had 3 polyps removed at 26 about 5 years before he went gluten free). They did find and remove one and I'm awaiting those results as well. So I guess I'm saying that I don't know if I have celiac or non celiac gluten sensitivity, but I had a polyp so it's something to watch for. Good luck with your health!

kareng Grand Master
kareng
Posted

I recently self diagnosed a gluten sensitivity and have been gluten free for 2 months. I waited until my celiac bloodwork came back negative but then went gluten free anyway. 2 days ago I had an upper endoscopy but I don'tknow if my biopsies would show celiac at this point even if I had it. I also had a colonoscopy (I'm a 32 yo female, not normally high risk, but my brother had 3 polyps removed at 26 about 5 years before he went gluten free). They did find and remove one and I'm awaiting those results as well. So I guess I'm saying that I don't know if I have celiac or non celiac gluten sensitivity, but I had a polyp so it's something to watch for. Good luck with your health!

Just an FYI - you are responding to a 9 year old thread. I don't think any of these posters have been on in years.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. SamAlvi
      - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      High TTG-IgG and Normal TTG-IgA

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing...
    2. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Blood tests for thiamine are unreliable. The nutrients from your food get absorbed into the bloodstream and travel around the body. So, a steak dinner can falsely raise thiamine blood levels in the following days. Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte...
    3. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine?
    4. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
    5. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc. Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food....
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,875
    • Most Online (within 30 mins)
      7,748
    Jen J.
    Newest Member
    Jen J.
    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

    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
×
×
  • 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.