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Newly Diagnosed Celiac Disease

Redanafs

By Redanafs
in Coping with Celiac Disease

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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? 

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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?

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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.

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