Newbie: Asymptomatic Celiac

[Beckyepg]

Hey Everyone! Hopefully I'm using this forum properly. I am a newly diagnosed Celiac and I was hoping to get some help because many of the doctors I've seen have been wildly unhelpful. They said I'm asymptomatic so I don't show any obvious signs when I eat something with gluten however my small intestine is getting damaged because of it and it's leading to other health issues such as osteoporosis. So honestly I just have no clue what's safe for me anymore, from my understanding there's Celiacs with different sensitivity levels, does that mean I'm less sensitive? Do I need to strictly eat foods with certified gluten free labels or are gluten free labels ok as well? I can't tell when I eat the foods if they somehow got tainted so I'll never even know if I'm being 'glutenated' so what do I do??? I'm really starting to spiral so if anyone has any kind of advice I'd greatly appreciate it!

[Scott Adams]

Welcome to the forum!

I’m sorry to hear about your challenges. It’s great that you’re seeking support. Even if you’re asymptomatic, it’s crucial to strictly avoid gluten to prevent further damage to your intestines and related health issues. All individuals with celiac disease, regardless of sensitivity level, need to be vigilant. Certified gluten-free labels are the safest bet, as they adhere to strict standards (less than 20 parts per million of gluten). Regular gluten-free labels are generally safe but can sometimes be less rigorously tested. To avoid cross-contamination, always check product labels, and consider consulting a dietitian specializing in celiac disease for personalized advice. You’re not alone in this, and it’s a learning process, so take it one step at a time!

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

 

[trents]

Welcome to the forum, @Beckyepg!

Becky, it might surprise you to know that many or most celiacs are largely asymptomatic for many years until the damage to the villous lining of the small bowel reaches a critical stage. We call them "silent" celiacs. That is largely my story. I had developed osteopenia by the time of my diagnosis at about age 50. I'm now 73.

What led to my diagnosis was not GI distress by elevated liver enzymes. At the time of my diagnosis, I could, like you, eat gluten with little or no reaction. So it was difficult to discern if I was being successful at the gluten free diet. This was especially true during the learning curve phase where I was not completely aware of the many places and ways gluten was hidden in the food supply. And this was back in the days when there weren't so many gluten free food options available and very few eateries offered gluten free options. I was still in my working years back then so I was eating at the company cafeteria and at company functions sometimes so more difficult to control what I was eating. Follow-up biopsies the first three years did not indicate healing was taking place as expected. Eventually, I got a better handle on avoiding gluten and a later biopsy showed my small bowel lining had healed but this was after I had retired and no longer eating at the company cafeteria. 

But here's what I want to highlight for you. After actually having been gluten free for a significant amount of time, my tolerance for gluten had become much less than it was at diagnosis. I became much more sensitive. I'm still not super sensitive but if I ingest a moderate amount of gluten I get violently ill with hours of severe cramps, emesis and diarrhea. And I'm talking about the amount of gluten found in the soy sauce they put in an appetizer size cup of soup at a Chinese restaurant. So, what I'm saying is that as you become educated about gluten free eating and more consistent with it you may find that you lose whatever tolerance to gluten you previously had. 

So, personally, I still battle with not knowing if I get glutened through trace amounts that I might encounter through cross contamination in mainline food products that would not have wheat/barley/rye in the ingredient list but were "produced on equipment that also processes wheat . . . ". I try to avoid using those products when I have gluten free or certified gluten free options but I still do use them to some extent. I also seem to get by without discernable reactions when choosing gluten free menu options at eateries that offer such. But I can't know for sure if I have got by without any inflammation at all. It's both a blessing and a curse in that sense when you are not a super sensitive celiac. So, having said all that, you will just have to feel your way through this. 

You can eat mainline food safely if you are careful and exercise discernment. Much mainline food is naturally gluten free and it is less expensive and generally more nutritious. Gluten-free flours are not required to be enriched as is wheat flour. If you have the option of getting something that is Certified Gluten free as opposed to just Gluten free, go for the former. But in your case, it probably won't make a lot of difference.

I would also suggest getting follow-up antibody testing done periodically and/or biopsies to check for progress in healing. That should tell you in a rough kind of way if you are being successful in your efforts to eliminate gluten from your life.

[RMJ]

I am also a silent celiac. I have to go by my annual blood tests for celiac antibodies to see if my diet is sufficiently gluten free. In order to keep the antibodies in the normal range I have to pretty much stick to certified gluten free foods if I eat processed foods.

[Beckyepg]

@trents thanks so much for sharing that was actually really helpful thank you!! Can you really get retested? Honestly no one is following my Celiac progression all they told me was come back if you have any problems. Do have to ask to get retested or did they recommend for you to get some tests done every once in awhile?

[Beckyepg]

@RMJ Wow if you don't mind me asking is this something you do with your primary doctor or do you have to see a specialist to get those blood tests?

[Beckyepg]

@Scott Adams Thank you for the welcome and the information it was really helpful!

[RMJ]

51 minutes ago, Beckyepg said:

@RMJ Wow if you don't mind me asking is this something you do with your primary doctor or do you have to see a specialist to get those blood tests?

I go to a specialist, but that seems to be the way the healthcare system I use works.  The job of primary care seems to be to send people to specialists.

[trents]

Typically, a primary care doc will order the initial round of blood antibody tests. If there are positives in those tests he will then refer the patient to a GI doc who may repeat the antibody blood tests and even order a more complete antibody panel, especially if the initial antibody tests are borderline positive. Following that, the GI doc will typically schedule an endoscopy/biopsy to confirm the results of the blood antibody testing. This is how, typically, the diagnostic process flows but there are plenty of exceptions. Once you are handed over to the care of a GI doc, then your follow-up care, including subsequent testing to check on progress with regard to gluten-free eating adherence and also healing of the gut, would be handled by the GI doc. But I would not take anything for granted even then and I would ask the GI doc about follow-up testing in six months to a year. 

So, if your primary care doc has not already referred you to a GI specialist, I would request that.

Edited August 2, 2024 by trents

[Beckyepg]

@trents I actually did see a GI doctor they officially diagnosed me after an endoscopy and they told me to go on a strict gluten free diet. They also told me just come back if you have an issues no mention of any kind of follow up. Judging from your response I'm assuming that's not typically how Celiac treatment is supposed to go?

[trents]

8 hours ago, Beckyepg said:

@trents I actually did see a GI doctor they officially diagnosed me after an endoscopy and they told me to go on a strict gluten free diet. They also told me just come back if you have an issues no mention of any kind of follow up. Judging from your response I'm assuming that's not typically how Celiac treatment is supposed to go?

I would not say the instructions your GI doc gave are atypical but I would say they are less than optimal and less than ideal. The after-diagnosis follow-up attentiveness experienced by celiac patients from their doctors will likely be all over the map depending on the personality of the physician involved as well as their level of knowledge and experience in treating and caring for celiac patients. So, you can go either of two routes here for follow-up. You can go to you primary care doc and ask for repeat blood antibody testing in about six months to check for gluten free eating compliance and healing or you can go back to the GI doc and request the same or request a follow-up endoscopy/biopsy in about a year. I think the key here is realizing that if your doctors aren't taking the lead in follow-up care, you need to be assertive and request it. If they are unwilling to cooperate, find different doctors.

[Beckyepg]

6 hours ago, trents said:

I would not say the instructions your GI doc gave are atypical but I would say they are less than optimal and less than ideal. The after-diagnosis follow-up attentiveness experienced by celiac patients from their doctors will likely be all over the map depending on the personality of the physician involved as well as their level of knowledge and experience in treating and caring for celiac patients. So, you can go either of two routes here for follow-up. You can go to you primary care doc and ask for repeat blood antibody testing in about six months to check for gluten free eating compliance and healing or you can go back to the GI doc and request the same or request a follow-up endoscopy/biopsy in about a year. I think the key here is realizing that if your doctors aren't taking the lead in follow-up care, you need to be assertive and request it. If they are unwilling to cooperate, find different doctors.

Thank you so much you've been a huge help! I'm really grateful 

[Bogger]

OMG!! I literally just signed up for celiac.com to check out the forums to see if I can get any info on my condition….and there you all are!

About 35yrs ago (currently f67) while researching other food based allergies, I tested positive for celiac and was told to not eat gluten. I did not have, and still do not have, any GI symptoms. So, in my mind I assumed that my celiac disease was “dormant”. I learned last year that there is no dormant when I was diagnosed with osteoporosis. At about age 50yrs, a bone scan showed low bone mass. I thought it was age related so I didn’t think it was abnormal. Doctors around here come and go so when I would fill out a new patient form I rarely put down celiac. My current primary is very clear on my condition. Aside from avoiding gluten there is nothing else she can do for me. It's pretty much up to me to ask questions and how much to trust the situation I find myself in. 
 

So, I guess what I need from this forum is knowing this condition isn’t normal, but is manageable.  🤞

[trents]

Welcome to the forum, Bogger! There is something you can do in addition to committing to totally gluten free eating and that is to add into your diet some high quality vitamin and mineral supplements to compensate for the deficiencies you have likely developed over the years for the same reason you have not been absorbing calcium and magnesium from your diet which has resulted in osteoporosis. So, get some B12, B-complex, magnesium glycinate or magnesium citrate (not magnesium oxide), zinc and 5-10,000 IU daily of D3. Make sure they are all gluten free. A good source is Costco.

[Bogger]

Hi Trents. Thanks for your quick reply.

I’ve always been pretty well set up for vitamins. Currently, I take Smarty Pants multi-vit Masters Formula women’s 50+, Alive B-complex, D3 5,000iu, vit C 50mg. I was taking 2400mg calcium citrate but after some research I changed to a plant based calcium: New Chapter Bone Strength. Since I am mainly eating a plant based diet (except for occasionally eggs & chicken), I’m going to ask my doctor about needing additional B12. Fortunately I have a wellness appt later this month.

Thanks for the info Trents. I’ll look at the magnesium amount in my multi-vit. Last time I tried just a small amount of additional magnesium it really messed up my stomach.

[trents]

Bogger, the form of magnesium you take is critical. The cheapest and most common form you see on store shelves is magnesium oxide. It is not absorbed well and acts like a laxative (think, "milk of magnesia"). Because it isn't absorbed well it draws water into the colon and causes loose stools. Magnesium glycinate and magnesium citrate are much better absorbed.