New to Celiacs

[Sue Bee]

Hi Everyone 😊

I am 66 years old and  just been diagnosed with Celiacs Disease and am still in denial. Can’t seem to wrap my head around it. I’m retired and my husband is very supportive. 

All of my serology came back negative; however my genetic test came back positive. I have no symptoms what so ever. 
I keep hoping it could be something “simpler” like SIBA. 

I have started a gluten free diet. 

I was referred to this website and found it to be so helpful already.  It’s nice to know I’m not alone.  

Any advice for a newbee would be greatly appreciated. I am feeling like my days of dining out and eating at family & friends’ houses is over. 

Looking forward to hearing some helpful advice from people who are walking in my shoes !
 

 

 

 

[trents]

Sue Bee, who diagnosed you with celiac disease and on what basis? Your blood antibody values were negative and you say you have no symptoms. Did you have an endoscopy with biopsy to confirm celiac disease? This just doesn't make sense given the information you share. Is there more to it?

You need to realize that have the genes for celiac disease does not equate to having celiac disease. Having the genes only establishes the potential for developing celiac disease. It also takes some kind of triggering stress event, such as a viral infection, to produce active celiac disease in those who have the genetic potential. Something like 40% of the population have the genes (one or both of them) but only about 1% actually develop celiac disease.

[Sue Bee]

4 minutes ago, trents said:

Sue Bee, who diagnosed you with celiac disease and on what basis? Your blood antibody values were negative and you say you have no symptoms. Did you have an endoscopy with biopsy to confirm celiac disease? This just doesn't make sense given the information you share. Is there more to it?

You need to realize that have the genes for celiac disease does not equate to having celiac disease. Having the genes only establishes the potential for developing celiac disease. It also takes some kind of triggering stress event, such as a viral infection, to produce active celiac disease in those who have the genetic potential. Something like 40% of the population have the genes (one or both of them) but only about 1% actually develop celiac disease.

Hi,

Thanks for responding. 
I had an endoscope done June 2021. A biopsy showed I had villous atrophy. 
I had the endoscope done as I was having bad GERD (it has since become much better). 
I understand villous atrophy is a symptom of Celiacs but, I am also going to be doing a breath test for SIBA. 

I’m just not 100% convinced I have Celiacs.  The diagnosis was based on the gene test and the endoscope; however, villous atrophy can also be a symptom of SIBA. 
This is all very confusing!!

 

[trents]

I think you may have mistyped. It's SIBO not SIBA. Small Intestine Bacterial Overgrowth.

Thanks for the additional information, especially about the endoscopy and biopsy. Makes much more sense now.

There are some other conditions and meds that can cause villous atrophy: https://www.verywellhealth.com/villous-atrophy-562583

It might be necessary for you to trial a gluten free diet to get to the bottom of this, especially if the other possible causes of the atrophy are ruled out. And many celiacs are asymptomatic in the earlier stages villi damage. We call them "silent" celiacs. And we do have forum participants report villi damage with negative antibody testing?

Sue Bee, exactly which antibody tests were run? Sometimes only the tTG-IGA is run but there are others that can be run which sometimes catch what the tTG-IGA misses.

[Sue Bee]

54 minutes ago, trents said:

I think you may have mistyped. It's SIBO not SIBA. Small Intestine Bacterial Overgrowth.

Thanks for the additional information, especially about the endoscopy and biopsy. Makes much more sense now.

There are some other conditions and meds that can cause villous atrophy: https://www.verywellhealth.com/villous-atrophy-562583

It might be necessary for you to trial a gluten free diet to get to the bottom of this, especially if the other possible causes of the atrophy are ruled out. And many celiacs are asymptomatic in the earlier stages villi damage. We call them "silent" celiacs. And we do have forum participants report villi damage with negative antibody testing?

Sue Bee, exactly which antibody tests were run? Sometimes only the tTG-IGA is run but there are others that can be run which sometimes catch what the tTG-IGA misses.

 

[trents]

Also, PPI's and H2 blockers have been associated with Celiac disease in a causal sense: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3947159/

[Sue Bee]

Just now, Sue Bee said:

 

 

A Tissue Transglutaminase Ab, IgA, S was run. 
 

After reading up on what a strict gluten free diet means, I want to be 100% sure about my celiacs diagnosis & eliminate any other possibilities 
 

I will continue with a gluten free diet. I am going to take the breath test for SIBO over the next 2 days. 
 

In addition, when the endoscope was performed last June, they found a polyp & Mucosal fissuring (tearing) in the duodenal bulb.  I want to discuss this with my GI dr. to see if this could have created inflammation, thereby causing villous atrophy. 
 

Also, since I have no symptoms of celiacs to begin with, how will I know if a gluten free diet is working ?  The GI dr. said do the diet for 6 to 9 months, then they will do another endoscope to see if there is improvement in the villous atrophy. So, I guess that will tell if the diet is working???

I tend to be a very structured, in control person. I’m trying to figure out the best course of action & cover all bases. 
 

I am finding communication with my GI dr. a bit frustrating as we can only do zoom appts. & she has a “thick” accent & hard to understand sometimes. 
 

 

1 minute ago, Sue Bee said:

 

A Tissue Transglutaminase Ab, IgA, S was run. 
 

After reading up on what a strict gluten free diet means, I want to be 100% sure about my celiacs diagnosis & eliminate any other possibilities 
 

I will continue with a gluten free diet. I am going to take the breath test for SIBO over the next 2 days. 
 

In addition, when the endoscope was performed last June, they found a polyp & Mucosal fissuring (tearing) in the duodenal bulb.  I want to discuss this with my GI dr. to see if this could have created inflammation, thereby causing villous atrophy. 
 

Also, since I have no symptoms of celiacs to begin with, how will I know if a gluten free diet is working ?  The GI dr. said do the diet for 6 to 9 months, then they will do another endoscope to see if there is improvement in the villous atrophy. So, I guess that will tell if the diet is working???

I tend to be a very structured, in control person. I’m trying to figure out the best course of action & cover all bases. 
 

I am finding communication with my GI dr. a bit frustrating as we can only do zoom appts. & she has a “thick” accent & hard to understand sometimes. 
 

 

 

[Sue Bee]

17 minutes ago, trents said:

Also, PPI's and H2 blockers have been associated with Celiac disease in a causal sense: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3947159/

Very good to know !! Thank you. 
I will bring this up to Dr as well. 

[trents]

As your doctor indicated, a follow-up endoscopy/biopsy would be needed to see if a gluten-free diet is helping the villous atrophy. But the challenge will be the learning curve of truly achieving a gluten-free diet. And I would not get another endoscope done sooner than 6 months out. It can take up to two years of gluten-free eating to experience complete healing of the villi.

[trents]

By the way, GERD is a symptom of celiac disease so you are not asymptomatic, though you say that is much better. Are you on an PPI's or H2 blockers?

[Sue Bee]

1 minute ago, trents said:

By the way, GERD is a symptom of celiac disease so you are not asymptomatic, though you say that is much better. Are you on an PPI's or H2 blockers?

Yes, Famotadine.  
The more I read about following a strict gluten diet, the scarier it becomes….not using the same toaster as everyone else in my house, my husband having to brush his teeth before he kisses me, dining out, having dinner at some else’s house, etc. 

 

I guess I’m in denial. 

Just now, Sue Bee said:

Yes, Famotadine.  
The more I read about following a strict gluten diet, the scarier it becomes….not using the same toaster as everyone else in my house, my husband having to brush his teeth before he kisses me, dining out, having dinner at some else’s house, etc. 

 

I guess I’m in denial. 

Thank you for all your info. It is helpful 😊

[Sue Bee]

2 minutes ago, Sue Bee said:

Yes, Famotadine.  
The more I read about following a strict gluten diet, the scarier it becomes….not using the same toaster as everyone else in my house, my husband having to brush his teeth before he kisses me, dining out, having dinner at some else’s house, etc. 

 

I guess I’m in denial. 

Thank you for all your info. It is helpful 😊

I guess I should count my blessings. Celiacs disease is a lot worse for a lot of people. 

[trents]

13 minutes ago, Sue Bee said:

I guess I should count my blessings. Celiacs disease is a lot worse for a lot of people. 

If you do go on a gluten-free diet you may find you become more sensitive to minor amounts of gluten over time. We tend to lose tolerance for it when it is withdrawn. Also, in the first 2-3 weeks after going off gluten you may feel worse. There can be withdrawal malaise. Since gluten-free flours do not contain enrichments like wheat flour does, it would be a good idea to get some good gluten-free vitamin supplements on board. You may have already been experiencing some nutrient and mineral deficiencies because of damage to your villi, the nutrient absorbing organ of the body. We always recommend adding in a high potency B-Complex and about 5000 IU of D3 daily.

Yes, there are huge social/lifestyle changes connected with gluten-free eating. But over time it becomes the new norm. Most family and friends come on board eventually, except weird uncle Harry who is convinced it's all in your head. Developing a concise handout explaining celiac disease to give to family and friends can be helpful as well as developing some gracious responses to diffuse awkward moments. Counter invitations to those who invite you to dinner are one way of gaining control of the situation. It gives opportunity to do some education about celiac disease and gluten-free eating. Taking your own food to gatherings is also necessary sometimes.

[Sue Bee]

7 minutes ago, trents said:

If you do go on a gluten-free diet you may find you become more sensitive to minor amounts of gluten over time. We tend to lose tolerance for it when it is withdrawn. Also, in the first 2-3 weeks after going off gluten you may feel worse. There can be withdrawal malaise. Since gluten-free flours do not contain enrichments like wheat flour does, it would be a good idea to get some good gluten-free vitamin supplements on board. You may have already been experiencing some nutrient and mineral deficiencies because of damage to your villi, the nutrient absorbing organ of the body. We always recommend adding in a high potency B-Complex and about 5000 IU of D3 daily.

Yes, there are huge social/lifestyle changes connected with gluten-free eating. But over time it becomes the new norm. Most family and friends come on board eventually, except weird uncle Harry who is convinced it's all in your head. Developing a concise handout explaining celiac disease to give to family and friends can be helpful as well as developing some gracious responses to diffuse awkward moments. Counter invitations to those who invite you to dinner are one way of gaining control of the situation. It gives opportunity to do some education about celiac disease and gluten-free eating. Taking your own food to gatherings is also necessary sometimes.

Thank you 🙏 

So far, all my blood work has been good for nutrient/vitamin deficiencies. I have been taking calcium citrate & D3 for a while now due to age related osteoporosis (or maybe 🤔 it’s due to celiacs???)  but, I will talk to the Dr about the other supplements. 
 

Food is a big deal in our family.  I will have to educate them.  My thinking right now is to bring my own food, for my piece of mind about cross contamination. Plus, it’s easier on the people hosting the event. 
 

This adjustment to a life food adjustment will just take some time. I just need to re-educate myself, change up how I do things and “Eat to live, not live to eat.”
 

Thank you for taking the time to “educate” me. It’s been VERY helpful !!

[Wheatwacked]

In one study, 95% of patients with duodenal villous atrophy were diagnosed with coeliac disease, meaning that 5% had an alternative diagnosis.  In one study, SIBO affected 11% of patients with biopsy-proven, non-responsive coeliac disease.  SIBO becomes more common with advancing age and is often predisposed to by an underlying abnormality affecting the small intestine or defensive mechanisms. Other predisposing factors include the prolonged use of acid-lowering medications, such as proton-pump inhibitors and chronic renal failure.    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3926449/

I think your doctor is being proactive. The typical person with Celiac Disease goes through 10 years of misdiagnosis before Celiac Disease is confirmed so best to eliminate or confirm early on. Consider it part of the diagnostic process.

Dr Joel Fuhrman wrote a book called Eat to Live that may help you get off the proton pump inhibitors while improving your health. Though not a completely gluten free diet, it is easily adaptable to GFD.  It is a good way to eat to improve your nutrition and reverse damage caused by the modern American diet, Celiac or not.

 

[jtalbot1021]

On 2/12/2022 at 11:39 PM, Sue Bee said:

Hi Everyone 😊

I am 66 years old and  just been diagnosed with Celiacs Disease and am still in denial. Can’t seem to wrap my head around it. I’m retired and my husband is very supportive. 

All of my serology came back negative; however my genetic test came back positive. I have no symptoms what so ever. 
I keep hoping it could be something “simpler” like SIBA. 

I have started a gluten free diet. 

I was referred to this website and found it to be so helpful already.  It’s nice to know I’m not alone.  

Any advice for a newbee would be greatly appreciated. I am feeling like my days of dining out and eating at family & friends’ houses is over. 

Looking forward to hearing some helpful advice from people who are walking in my shoes !
 

 

 

 

Helpful advice isn't always welcomed advice. Be careful with restaurants. Do not eat eggs in restaurants. I've worked in one. The melted butter that brushes toast is on the cooler side of the grill. With the eggs. Cross contamination with wheat toast.

[jtalbot1021]

3 minutes ago, jtalbot1021 said:

Helpful advice isn't always welcomed advice. Be careful with restaurants. Do not eat eggs in restaurants. I've worked in one. The melted butter that brushes toast is on the cooler side of the grill. With the eggs. Cross contamination with wheat toast.

Ps im 66 too

 

[Sue Bee]

8 minutes ago, jtalbot1021 said:

Ps im 66 too

 

Thanks for the heads up !

[jtalbot1021]

Anytime