Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Years of undiagnosis

James47
 Share

Recommended Posts

James47 Rookie
James47
Posted

Hi everyone,I'm 48 and after suffering ill health that really declined over last couple years I have recently been diagnosed with celiac.I got an endoscopy and had I been spitting up blood a lot .the doctors said internally it's like a barren wasteland but assured me I will get full recovery but be long process.Is there anything I can do immediately to help with internal recovery,my blood count is extremely low as well.

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

Celiac.com Sponsor (A8-M):


trents Grand Master
trents
Posted

Welcome to the forum, James47!

It can take a couple of years or longer for complete healing of your gut once you go gluten free. Celiac disease damages the villi that line the small bowel. This is the area of the intestinal track where all of our nutrition is absorbed from what we eat. Consequently, celiac disease typically causes vitamin and mineral deficiencies which, in turn, results in a myriad of other health issues. So, besides really taking gluten-free eating seriously, you should invest in some quality gluten-free vitamin and mineral supplements. We would recommend: an adult multivitamin, high potency B-complex, sublingual B12, 5-10k of D3 daily, magnesium glycinate and zinc. Costco's Nature Made and Kirkland brands are a good choice for the adult mv, D3,B-complex, and zinc but the mag glycinate you won't find there. I get that on Amazon. Make sure all supplements are gluten-free. Wheat starch is sometimes used as a filler in pills.

In your case, a gluten-free iron supplement. Some people don't tolerate iron well so look into the buffered products if that is the case for you.

As far as gluten-free lifestyle, this primer might help you get off to a good start as there is a learning process involved:

 

James47 Rookie
James47
Posted
  • Author
13 minutes ago, trents said:

Welcome to the forum, James47!

It can take a couple of years or longer for complete healing of your gut once you go gluten free. Celiac disease damages the villi that line the small bowel. This is the area of the intestinal track where all of our nutrition is absorbed from what we eat. Consequently, celiac disease typically causes vitamin and mineral deficiencies which, in turn, results in a myriad of other health issues. So, besides really taking gluten-free eating seriously, you should invest in some quality gluten-free vitamin and mineral supplements. We would recommend: an adult multivitamin, high potency B-complex, sublingual B12, 5-10k of D3 daily, magnesium glycinate and zinc. Costco's Nature Made and Kirkland brands are a good choice for the adult mv, D3,B-complex, and zinc but the mag glycinate you won't find there. I get that on Amazon. Make sure all supplements are gluten-free. Wheat starch is sometimes used as a filler in pills.

In your case, a gluten-free iron supplement. Some people don't tolerate iron well so look into the buffered products if that is the case for you.

As far as gluten-free lifestyle, this primer might help you get off to a good start as there is a learning process involved:

 

Listen thank you so much that was very helpful .it's an education these days and realise will be long process..thanks again

 

James 

captaincrab55 Collaborator
captaincrab55
Posted
6 hours ago, James47 said:

Hi everyone,I'm 48 and after suffering ill health that really declined over last couple years I have recently been diagnosed with celiac.I got an endoscopy and had I been spitting up blood a lot .the doctors said internally it's like a barren wasteland but assured me I will get full recovery but be long process.Is there anything I can do immediately to help with internal recovery,my blood count is extremely low as well.

IMO, First, You need a strict gluten-free diet, Second, You need to visit a Hematologists to study your low blood count.  Third,  You need a General Practitioner that understands Celiac Disease.   Just as important, Don't forget to visit your GI Doctor.   Good Luck

 

Scott Adams Grand Master
Scott Adams
Posted

I am concerned that you said you are spitting up blood… This is not a typical symptoms of celiac disease. Be sure to consult your doctor about this, as it could be something else separate from your celiac disease.

trents Grand Master
trents
Posted

Scott is right. Spitting up blood is not a normal symptom of celiac disease. Did the doctor comment on that in relation to the endoscopy? Do you have peptic ulcers or something that needs special attention? And it may be contributing to your low blood counts.

James47 Rookie
James47
Posted
  • Author

.Listen appreciated guys thank you.well no more was mentioned so I assumed was just the rawness internally that was contributed to that.they said my insides had almost totally eroded.tbh after 4 weeks of the gluten free diet it's not as much so has been improvement but my mid drift still feels like iv took a kicking

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

Celiac.com Sponsor (A8-M):


Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      126,055
    • Most Online (within 30 mins)
      7,748
    malcolmg
    Newest Member
    malcolmg
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.1k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Kathleen JJ
      Options - 7 year old boy - Helicobacter pylori and serology

      By Kathleen JJ · Posted

      And yes, of course it's better to know and we will adjust.  It's just, he's 7 and in our house we can control what he gets. But he plays soccer 3 times a week and in the changing room the boys share candies. I can and will tell him not to accept them any more, but "mistakes" will be made.   I'm really burdened by the potential social impact for him. He so loves to go to a restaurant as a family - I'll guess that's finished. Going to birthday parties at another kids house? I am reading about Coeliacs and apparently the fact that something as much as TOUCHED something with wheat is enough, even if he doesn't feel the symptoms - how can we control that bar from keeping him locked up?    And the worst worry of all: how do you tell a little boy to do all of this to not have symptoms that he does not have. If he'd been having horrible diarrhea or feeling really tired, we could tell him 'see, you feel so much better now, that kind of food was just not good for your body', but now, what will our argument be? For clarity: of course we will put him on the diet, I am not saying I don't believe in the necessity of that, it is just that it will be quite a stretch to 'sell' it to him 😞
    • StaciField
      My bone structure is disintegrating and I’m having to have my teeth removed

      By StaciField · Posted

      I’m 41. You have helped me achieve the goals of finding a way of getting nutrients into my body so I will see how it works for me. Thank you so much.
    • Kathleen JJ
      Options - 7 year old boy - Helicobacter pylori and serology

      By Kathleen JJ · Posted

      Thank you for your reaction. The reference values are both "<10", although I found a medical paper from Netherlands (I'm Belgian) who use the same values and there the see a positive daignosis as twice more then 200 and a positive biopsie. I didn't see how to change this in my original message, sorry...
    • cristiana
      Options - 7 year old boy - Helicobacter pylori and serology

      By cristiana · Posted

      Hi Kathleen Welcome to the forum. I am based in the UK so I am just picking this post up before our US based moderators appear.  I think they will want to know the lab values of both of the figures you have provided us with (min/max reading) as they tend to vary - could you post those for us, please? We see a lot of coeliacs who also have helicobacter pylori on this forum.  I am not sure how that would reflect in the blood results so I will leave this to be answered by my more experienced colleagues @trents or @Scott Adams. Obviously, you won't really know for sure where things stand until you have your meeting with the consultant.  I am sorry that you have to wait, but it will be worth knowing one way or another.  Apart from his recent gastric issues, it is fantastic to know that your son is otherwise a picture of health.  But it is worth bearing in mind that undiagnosed coeliac disease can cause health issues in the longer term, so far better to know now if he does turn out to have coeliac disease and adapt your son's diet accordingly, before other health issues have a chance to appear. Cristiana  
    • Kathleen JJ
      Options - 7 year old boy - Helicobacter pylori and serology

      By Kathleen JJ · Posted

      Hi all, I'm very new at this and 'this' has been quite a rollercoaster ride.   Last august my 7 year old son suddenly had these colic like pain attacks that would come a few times per day/night during 10 days. Because they were that bad and because our older daughter had her appendix taken out at 7, we ended up at ER twice to have him checked out. On both accounts blood was taken, on one account an ultrasound was made, showing swollen lymph nodes around the stomach, and the working theory was it was a violent reaction to a viral infection (even though he was not nauseous nor had diarrhea or anything like that). After 10 days it stopped as suddenly as it came on.   On October 1d my daughter started vomiting in the middle of the night, had a fever, and my son also threw up once (no fever). We kept them home from school, daughter kept on vomiting, fever stayed, son was perfectly healthy during the day, although he only ate yoghurt to be safe. The plan was to let him go to school the day after. In the night prior to his school return however, he woke up at 1, screaming with pain, begging to go to ER, which we did - the pain from august had returned.   Again bloodwork, but nothing found. It ended up only being that one pain attack, but because they were that bad, we went to the pediatrician the week after to have him checked up more thoroughly. He is a very energetic, sporty boy and he showed off his six pack with great pride to the doctor. She said he looked as an example of health, but did a more extended search because as the last blood test his liver values had been ever so slightly raised and she wanted to see how they'd do after a month.    So on November 8 we had his blood drawn again. His liver values had returned to normal, which did confirm the working theory that his pains were viral-infection triggered.   However, to everyone's (including the doctor) surprise, he also had these values: Transglutaminase IgA + >128 U/mL Gliadine IgG + 123.0 U/mL    I take it these are quite high. So last Tuesday he got his gastroscopy done, we'll have the result around the 25d we hope.  Whilst going for taking samples of the bowel, the gastro enterologist did notice some nodes in his stomach that present like a reaction to a Helicobacter pylori type infection, which would very much explain the type of pains he had.   We are still very much in shock by the Ceoliakie diagnosis (I know, it still needs to be confirmed by the biopsy, but with those numbers we kind of expect it) as he has no symptoms at all. The doctor said 'once he goes on a gluten free diet you'll see him blossom into an energetic, more happy boy' and we're like: but he is bouncing around singing and joking all day, I really can't imagine him being MORE energetic and happy - meaning, he's welcome to be that of course, but this is not a tired, withdrawn kid.   And even if the biopsy gets back negative (unlikely), what could these numbers have meant then? Could the Helicobacter pylori have an influence on this?   I have so many questions but are only eligible for a consult on December 6d so my data driven mind is going crazy having so little information or knowing so little about what everything means...   Kind regards, Kathleen  
×
×
  • Create New...