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

Newly Diagnosed Celiac Disease

Redanafs

By Redanafs
in Coping with Celiac Disease

 Share

Recommended Posts

Redanafs Apprentice
Redanafs
Posted

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
Wheatwacked
Posted

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
trents
Posted

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 Apprentice
Redanafs
Posted
  • Author
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
trents
Posted

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 Apprentice
Redanafs
Posted
  • Author

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
trents
Posted

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 Apprentice
Redanafs
Posted
  • Author
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
trents
Posted
(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 Apprentice
Redanafs
Posted
  • Author
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
trents
Posted

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 Apprentice
Redanafs
Posted
  • Author
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
trents
Posted
5 minutes ago, Redanafs said:

I have Factor 5 Leiden as well. 

One gene or both?

Wheatwacked Veteran
Wheatwacked
Posted

 

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
Wheatwacked
Posted

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

Redanafs Apprentice
Redanafs
Posted
  • Author
51 minutes ago, trents said:

One gene or both?

Both 

trents Grand Master
trents
Posted

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

Redanafs Apprentice
Redanafs
Posted
  • Author
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 Apprentice
Redanafs
Posted
  • Author
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
trents
Posted

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 Apprentice
Redanafs
Posted
  • Author
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
trents
Posted

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
 Share
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. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      results from 13 day gluten challenge - does this mean I can't have celiac?

      highly unlikely NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean...
    2. cristiana
      - cristiana replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      21

      Insomnia help

      Thank you for your post, @nanny marley It is interesting what you say about 'It's OK not to sleep'. Worrying about sleeping only makes it much harder to sleep. One of my relatives is an insomniac and I am sure that is part of the problem. Whereas I once had a neighbour who, if she couldn't sleep, would simply get up again, make a cup of tea, read,...
    3. SilkieFairy
      - SilkieFairy replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      results from 13 day gluten challenge - does this mean I can't have celiac?

      It could be a fructan intolerance? How do you do with dates? https://www.dietvsdisease.org/sorry-your-gluten-sensitivity-is-actually-a-fructan-intolerance/
    4. Lkg5
      - Lkg5 replied to Matthias's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Unexpected gluten exposure risk from cultivated mushrooms

      Thank’s for addressing the issue of mushrooms. I was under the impression that only wild mushrooms were gluten-free. Have been avoiding cultivated mushrooms for years. Also, the issue of smoked food was informative. In France last year, where there is hardly any prepared take-out food that is gluten-free, I tried smoked chicken. Major mistake!
    5. catnapt
      - catnapt posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      results from 13 day gluten challenge - does this mean I can't have celiac?

      my IGG is 815 IGA 203 but tTG-Iga is <0.4!!!!!!!!!!!!! oh my god- 13 days of agony and the test is negative? I don't even know what to do next. There zero doubt in my mind that I have an issue with wheat and probably more so with gluten as symptoms are dramatically worse the more gluten a product has I am...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,353
    • Most Online (within 30 mins)
      7,748
    ace14219
    Newest Member
    ace14219
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
    • cristiana
      Insomnia help

      By cristiana · Posted

      Thank you for your post, @nanny marley It is interesting what you say about 'It's OK not to sleep'. Worrying about sleeping only makes it much harder to sleep.  One of my relatives is an insomniac and I am sure that is part of the problem.  Whereas I once had a neighbour who, if she couldn't sleep, would simply get up again, make a cup of tea, read, do a sudoku or some other small task, and then go back to bed when she felt sleepy again.  I can't think it did her any harm - she lived  well into her nineties. Last week I decided to try a Floradix Magnesium supplement which seems to be helping me to sleep better.  It is a liquid magnesium supplement, so easy to take.  It is gluten free (unlike the Floradix iron supplement).  Might be worth a try.        
    • SilkieFairy
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By SilkieFairy · Posted

      It could be a fructan intolerance? How do you do with dates?  https://www.dietvsdisease.org/sorry-your-gluten-sensitivity-is-actually-a-fructan-intolerance/
    • Lkg5
      Unexpected gluten exposure risk from cultivated mushrooms

      By Lkg5 · Posted

      Thank’s for addressing the issue of mushrooms.  I was under the impression that only wild mushrooms were gluten-free.  Have been avoiding cultivated mushrooms for years. Also, the issue of smoked food was informative.  In France last year, where there is hardly any prepared take-out food that is gluten-free, I tried smoked chicken.  Major mistake!
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      my IGG is 815 IGA 203  but tTG-Iga is   <0.4!!!!!!!!!!!!!   oh my god- 13 days of agony and the test is negative?  I don't even know what to do next. There zero doubt in my mind that I have an issue with wheat and probably more so with gluten as symptoms are dramatically worse the more gluten a product has   I am going to write up the history of my issues for the past few years and start a food/symptom diary to bring with me to the GI doctor in March.   I googled like crazy to try to find out what other things might cause these symptoms and the only thing that truly fits besides celiac is NCGS   but I guess there are some other things I maybe should be tested for ...? like SIBO?   I will continue to eliminate any foods that cause me distress (as I have been doing for the past couple of years) and try to keep a record. Can anyone recommend an app or some form or something that would simplify this? I have a very full and busy life and taking the time to write out each symptom name in full would be tedious and time consuming- some sort of page with columns to check off would be ideal. I am not at all tech savvy so that's not something I can make myself ... I'm hoping there's some thing out there that I can just download and print out   do I give up on testing for celiac with such a low number? I am 70 yrs old I have been almost completely off gluten for the most part for about 2 yrs. I had a meal of vital wheat gluten vegan roast,  rolls and stuffing made from home baked bread and an apple pie- and had the worst pain and gas and bloating and odd rumblings in my gut etc - almost went to the ER it was so bad. I was thinking, since I'm spilling a lot of calcium in my urine, that perhaps this was a kidney stone (never had one before but there's always that first time, right?)    Saw my endo on Jan 20th and after hearing the story about the symptoms from eating that holiday meal, she suggested doing a gluten challenge. She said 2 weeks was fine- she said stopping it in the middle if symptoms got bad was fine- In the meantime I'd read that 2 weeks was not enough- called and argued with the nurse about this, but ultimately decided to stop the gluten on the 13th day and get the test done because I was in too much pain and almost suicidal and knew I could not continue.   so.............. that's where I am now I have had no bread since Sunday. I did have some rolled oats today and had some gas and bloating afterwards I did have some wheat germ in a smoothie on Tuesday and had a stomach ache later that night.   but overall I feel so much better! all the joint pain is gone! the nausea is gone. The stomach pain and gas and bloating are going away. Still a bit gassy but no more of that horrible odor. wow, that would clear a room if I was out in public!  I see a GI nurse March 4th  I hope she'll be able to help sort this out! can you think of what my next steps might be?
×
×
  • 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.