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

Newly Diagnosed Celiac Disease


Redanafs

Recommended Posts

Redanafs Rookie

I don’t even know where to start. I’ve had intestinal problems for over 15 years. Was diagnosed w/IBS for those 15 yrs & finally a few months ago a new dr. completed blood work that shows I have celiac disease. I cannot eat any fruits or vegetables. It’s quite painful for me. I used to eat a lot of fruits and veggies but for the past year or so I get a really bad reactions. It’s not just intestinal reaction. Like a bad allergy or something. I just went back to eating meats, poultry, eggs, gluten free breads and cereals. I’ve tried canned fruits & that’s doesn’t help either.  How long does it take for the stomach/intestines to heal? 


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



Celiac.com Sponsor (A8-M):



Wheatwacked Veteran

Everyone is different. Some say six months and up. I think it depends on your food choices beyond just GFD. Celiac is a disease of malabsorption of the 10 or so vitamins and minerals absorbed in the small intestine, so you need to replenish what you are low on and get enough to develop reserves.

trents Grand Master

In adults, full healing of the villi can often take around two years. But there should be significant healing withing weeks or months that should result in your quite a bit better.

You may have other food intolerances besides celiac disease. Have you been tested for SIBO or even fructose intolerance? Many fruits are high in fructose.

Redanafs Rookie
35 minutes ago, trents said:
35 minutes ago, trents said:

No. The doctor just sent me an email that read eat a gluten free diet & that was it. It’s frustrating because it’s affecting my entire health & life. This is so embarrassing to even talk about but it’s affected me so bad. I’ll eat & my rectum gets inflamed & it’s painful. On top of that I get seriously ill where I’m in bed most of the day. I get sick a lot when I never used to but I think that’s what wheatwacked made a good point about malabsorption. I’m only 44 & I feel like I’m 90 & dying. I’m going to find a gastro dr that will do the Sibo & fructose test. Thanks for the suggestion. Any suggestions on healing regimens?  
 

trents Grand Master

There is a real learning curve when it comes to actually eating gluten free as opposed to just cutting out "most" gluten in the diet. There is the whole issue of cross contamination. Pills and supplements and oral hygiene products can be sources of "glutening". If you are still eating out then studies show that is the biggest risk for cross contamination. Maybe this will help:

 

Redanafs Rookie

I was reading other posts and came across a benedryl post. I take benedryl every night and didn’t assumed it was gluten free. Such a dumb assumption. Went out and purchased the dye & gluten free brand a few minutes ago. I really hope that takes care of it for me. Thanks for the information and I’m so glad I finally joined this site. 

trents Grand Master

Don't assume anything doesn't have gluten, except tap water maybe. Were you taking the benedryl tabs or liquid?


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



Celiac.com Sponsor (A8-M):



Redanafs Rookie
28 minutes ago, trents said:

Don't assume anything doesn't have gluten, except tap water maybe. Were you taking the benedryl tabs or liquid?

Pink tabs and sometimes the kids dissolvable. Yes you are correct. Never assuming. Changing my entire medication cabinet. Found the cabinet health website on here  

 

30 minutes ago, trents said:

Don't assume anything doesn't have gluten, except tap water maybe. Were you taking the benedryl tabs or liquid?

 

trents Grand Master
(edited)

Your Benadryl experience prompted me to check my own bottle. I use Kirkland (Costco) brand made by a company name LNK International, Inc. Pink tabs as well. Anyway, I called them and there is no wheat or gluten in the Kirkland version. They use corn starch for a filler.

Also, it is common for celiacs to develop other food intolerances. Dairy, oats (even gluten free oats), eggs, corn and soy are chief among them but it can be almost anything. Some foods have proteins that are similar to gluten and can cause cross reactions. Another thing to watch out for in that regard is "meat glue" used in processed meat products that are formed into convenient shapes.

 

Edited by trents
Redanafs Rookie
6 hours ago, trents said:

Your Benadryl experience prompted me to check my own bottle. I use Kirkland (Costco) brand made by a company name LNK International, Inc. Pink tabs as well. Anyway, I called them and there is no wheat or gluten in the Kirkland version. They use corn starch for a filler.

Also, it is common for celiacs to develop other food intolerances. Dairy, oats (even gluten free oats), eggs, corn and soy are chief among them but it can be almost anything. Some foods have proteins that are similar to gluten and can cause cross reactions. Another thing to watch out for in that regard is "meat glue" used in processed meat products that are formed into convenient shapes.

 

My stomach is doing much better with the dye free benedryl. I’m def thankful for that. Good to know they don’t have gluten in there’s. 
 

I am a big whole food eater. I get my meats from a local farm/butcher. I stopped eating veggies cause I ended up w/a bad rash all over my face & around my mouth. I have to see people all day long at my job. This kind of life is not normal. I like to get to the root cause of things and I have been dumbfounded by how many times I’ve been around in circles thinking I’ve solved my issue, but again I feel so ill. Every time I feel like I’ve made progress I feel like I fall 10 steps back. It doesn’t help that I have MTHFR either, both compounds. It makes things more complicated. But in my 20s, 30s & early 40s it was not this bad. I turned 44 this year & everything just seemed to go haywire lol 

trents Grand Master

MTHFR is a new one to me. I just looked it up. How does it affect you. Does it cause gait problems for you?

Yes, we seem to accumulate medical abbreviations as we progress through life and I'm not talking about MD. I was diagnosed with celiac disease about 20 years ago and about ten years ago I was diagnosed with a blood clotting disorder called Factor 5 Leiden, after winding up in the hospital with bilateral pulmonary embolism.

Redanafs Rookie
27 minutes ago, trents said:

MTHFR is a new one to me. I just looked it up. How does it affect you. Does it cause gait problems for you?

Yes, we seem to accumulate medical abbreviations as we progress through life and I'm not talking about MD. I was diagnosed with celiac disease about 20 years ago and about ten years ago I was diagnosed with a blood clotting disorder called Factor 5 Leiden, after winding up in the hospital with bilateral pulmonary embolism.

I have Factor 5 Leiden as well. 

trents Grand Master
5 minutes ago, Redanafs said:

I have Factor 5 Leiden as well. 

One gene or both?

Wheatwacked Veteran

 

Could be when you adjusted your diet to gluten-free you also cut back on choline, disabling the backup to MTHFR, which led to high homocysteine (indicator of cardo vascular inflammation) and that inflammation resulted in embolisms?

MTHFR is a key enzyme in the FA-dependent pathway; the FA-independent pathway utilizes choline or betaine to produce methionine and the methyl donor S-adenosyl-methionine (SAM).   https://www.medicalnewstoday.com/articles/326181#symptoms

Wheatwacked Veteran

Really out on a limb here; but could that mean chronic low B12 is a symptom of Choline deficiency?

Redanafs Rookie
51 minutes ago, trents said:

One gene or both?

Both 

trents Grand Master

I'm fortunate in that I have the heterozygous variant. But of course, I still have to be on warfarin for life.

Redanafs Rookie
6 minutes ago, trents said:

I'm fortunate in that I have the heterozygous variant. But of course, I still have to be on warfarin for life.

Let me clarify. Sorry bout that. I thought you meant both compounds. I have both mutation c677t and a1298c both heterozygous. 

Redanafs Rookie
On 3/28/2022 at 9:22 PM, trents said:

I'm fortunate in that I have the heterozygous variant. But of course, I still have to be on warfarin for life.

Hey Trents. Just sitting here thinking about how my dr. told me to take a baby aspirin everyday because of my factor 5. Every time I take that stuff it irritates my stomach. Any suggestions? And another question if you don’t mind me asking why warfarin if you are heterozygous? 

trents Grand Master

Not sure what's behind your question of why I am on warfarin when I have the heterozygous variant of Factor 5? The heterozygous variant still poses significant clotting risk but not as great as the homozygous variant. I have a paternal uncle with Factor 5 and he is on warfarin too.

Aspirin works in a different way than does warfarin. Aspirin makes the platelets more slippery so that don't stick together as easy. Warfarin decreases the body's ability to form blood clots by blocking the formation of vitamin K–dependent clotting factors. Vitamin K is needed to make clotting factors. I don't know, warfarin is what my physician and my uncle's physician prescribed so I assume they felt it was the most effective antidote for this condition.

I don't take aspirin products because of the greater risk it poses for ulcers, though enteric aspirin poses less danger of that.

Redanafs Rookie
18 hours ago, trents said:

Not sure what's behind your question of why I am on warfarin when I have the heterozygous variant of Factor 5? The heterozygous variant still poses significant clotting risk but not as great as the homozygous variant. I have a paternal uncle with Factor 5 and he is on warfarin too.

Aspirin works in a different way than does warfarin. Aspirin makes the platelets more slippery so that don't stick together as easy. Warfarin decreases the body's ability to form blood clots by blocking the formation of vitamin K–dependent clotting factors. Vitamin K is needed to make clotting factors. I don't know, warfarin is what my physician and my uncle's physician prescribed so I assume they felt it was the most effective antidote for this condition.

I don't take aspirin products because of the greater risk it poses for ulcers, though enteric aspirin poses less danger of that.

I was just curious because I too am heterozygous but my drs stated I can choose to take a baby aspirin, but there was no reason to go on a blood thinner. I was just questioning my drs input bout baby aspirin and my stomach. Thanks for the info. 

trents Grand Master

We also know that NSAIDs can cause villi blunting so that in combo with celiac disease might need to be looked at.

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

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,032
    • Most Online (within 30 mins)
      7,748

    DeeDde
    Newest Member
    DeeDde
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      That "gut ache" after drinking may be more than alcohol not agreeing with a gut that's trying to heal. Alcohol prevents absorption of vitamins, and actually breaks thiamine Vitamin B 1 so it cannot function.  Thiamine deficiency can cause Gastrointestinal Beriberi, with symptoms of digestive upsets and abdominal pain, nausea, vomiting, anorexia, and can cause neurological problems and problems with thinking and judgement.  I've experienced Gastrointestinal Beriberi myself.  Thiamine supplementation is a must, along with the other B vitamins and Vitamin C.   Gastrointestinal Beriberi and Wernicke's Encephalopathy Triggered by One Session of Heavy Drinking https://pubmed.ncbi.nlm.nih.gov/31543793/ https://pmc.ncbi.nlm.nih.gov/articles/PMC6739701/
    • Suze046
      Yeah I think my body is definitely telling me to lay off the alcohol I just don’t seem to agree with it right now but that might be because my gut is still trying to heal. 
    • Gwen myers
      We are a couple with celiac trying to find a concierge doctor in Palm Beach Gardens/West Palm/ Jupiter area that has knowledge of celiac .  Help!
    • Mettedkny
      Thank you so much for your validation. I completely agree with you that the crackers COULD be the culprit even with very small trace amounts (less than 20ppm) and accumulating over time - I am at the point where I am about to request that my son gets retested to make sure that my "control subject" is still testing perfectly lol. I have a meeting with my celiac disease doc tomorrow and will run the crackers by him to see if he is willing to retest in a few weeks. I have not had any of them for the past 3 weeks so far, so fingers crossed, we can retest and hopefully find out if it is them. And no - I have been scouring EVERYTHING to make sure nothing else has changed. Only use gluten-free lip products and toothpaste so not there either (but very good suggestion). Thank you for validating me. I feel like many are just saying "you are not being gluten-free enough - but I do have a perfect 16 year track record that proves otherwise - so has to be something sneaky.
    • Mettedkny
      OMG thank you so much for validating me in my "craziness" of being on the hunt for the culprit in my case. "Unfortunately" I do not eat any of the foods you mention, but have stopped eating the crackers that are labeled certified gluten-free to see if they might be the problem. I did NOT know about chicken being injected with gluten liquid - that is horrible!  Hoping my doc will agree to retest after I have been off the crackers for a while. My biggest mystery is - why do I not have ANY symptoms of being cross contaminated or glutened? There is no damage (thank godness) to my villi, and normally I will get canker sores the moment something is even the slightest bit cross contaminated... the hunt continues and I will follow up once I find the answer. Glad you found yours! 
×
×
  • Create New...