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

Borderline Celiac?

livinthelife

Recommended Posts

livinthelife Apprentice
livinthelife
Posted

I have been struggling with ongoing gastro troubles off and on for a long time. I thought they were "just a part of life" until last summer a year ago when I got a parasite on vacation. I took several rounds of antibiotics but never fully recovered. The other three who got sick took meds and were well quickly. Doc did a celiac panel which was negative and a barium CT scan which showed nothing in January. I took even more antibiotics, which seemed to help a little Fast forward to August. 

 

Again, like last fall, I had accidents in the car, in the middle of the night, and uncontrollable problems, as I'm sure most of you are familiar with. I had a slight reprieve in symptoms for a few months and then they came back with a vengeance. All of the sudden I was having accidents again and losing weight without trying. I also have no energy. Hair loss, dry skin...so many things I've since read on this forum.

 

GP referred me to new gastro doc who did a colonoscopy. Found a polyp (had other polyps  eight years ago, none three years ago - have colonoscopy every five years due to personal and family history) and a tremendous amount of ileal villous blunting. He told me the biopsy presented celiac but that he needed to do an endoscopy to be 100% sure. Those results didn't show blunting but did show inflammation. He said I have "borderline celiac" and is redoing blood work just to make sure. Also, he wants me to go gluten-free for a month or two and says he's pretty sure I'll feel so much better.

 

Does this sound familiar to anyone? 

 

By the way, thanks to everyone who posts here. I am learning so very much!

 

 

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

Celiac.com Sponsor (A8-M):


nvsmom Community Regular
nvsmom
Posted

Welcome to the board.  :)

 

There really is no borderline celiac - you either have it or you don't. That "borderline" talk probably refers to the degree of damage found. Some celiacs have a great deal of damage and others just have patchy. It is thought by some that early celiac (in the first few years) often results in patchier and less severe damage and the complete villus atrophy occurs in cases that have gone undiagnosed longer.  

 

I mostly agree with that but want to stress that not all celiacs experience the disease in the same way. Some celiacs only have one type of positive autoantibodies, some have all positive, some have all negative yet have a positive endoscopic biopsy, and yet others have a negative biopsy with positive blood tests.... There's a lot of variation.

 

If you are having the endoscopic biopsy, make sure you continue to eat gluten until the test is done or it will most likely give a negative result.  You might want to consider trying the blood tests again as autoantibody levels can fluctuate and might register on the blood test now. The tests to request are:

tTG IgA and tTG IgG

DGP IgA and DGP IgG

EMA IgA

total serum IgA (control test)

AGA IgA and AGA IgG (and older and less reliable tets)

 

Good luck with the tests and with going gluten-free afterwards.  I hope you feel much better soon.

JustCricket Newbie
JustCricket
Posted

I couldn't agree more with nvsmom. I think she's completely right about what the doc meant by "borderline." Hopefully, you've caught the illness early and have avoided a lot of issues. I hope you feel better soon! :)

livinthelife Apprentice
livinthelife
Posted
  • Author

I couldn't agree more with nvsmom. I think she's completely right about what the doc meant by "borderline." Hopefully, you've caught the illness early and have avoided a lot of issues. I hope you feel better soon! :)

Thank you both for your replies. I just got through with more blood work and am officially going gluten free! Wish me luck!! 

 

Has anyone ever heard of blunted villi "classic celiac" in the ileum from a colonoscopy biopsy and only inflammation in the duodenum with the endoscopy? The more I read, the more I realize how atypical so many people's are. I just hope I feel better QUICKLY!!

mommida Enthusiast
mommida
Posted

Celiac is mostly diagnosed from the blood panel and endoscopy with biopsy (of the small intestine not not the colon).

 

Keep a food journal.  It can help find "hidden" gluten.  (yes, that small splash of soy sauce is gluten.)  It can help find areas of cross contamination.  (Switching to gluten free I kept a bottle of vanilla from the "gluten days" that must have been contaminated. ~ the note taking helped me track it down.

 

It is possible that you will have other food sensitivities.  (if the villi in your small intestine are damaged, you may have problems with dairy as the tip of the villi is involved with digesting dairy.)

 

Get a copy of ALL your testing reports.  It will be handy to see a report of all the damage.  (my daughter has had many endoscopies with biopy for Celiac and Eosinophilic Esophagitis.  Since these are the main reason for the scoping, invariably the doctor neglects to mention the signs of chronic gastritus at the top of the stomach.  That is important to me to stay consistant with the symptoms she tells me.  It has caused her pain and only the written report told me why.

Archived

This topic is now archived and is closed to further replies.

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. RMJ
      - RMJ replied to Xravith's topic in Introduce Yourself / Share Stuff
      1

      Do Gluten Enzymes actually work?

      If you successfully digest gluten with enzyme supplements so it won’t give you side effects, your challenge won’t be worthwhile because the digested fragments of gluten also won’t stimulate antibody production or cause intestinal damage.
    2. FannyRD
      - FannyRD replied to FannyRD's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Gluten free phosphate binders for dialysis patients

      Thanks for the resource! I will check it out!
    3. Scott Adams
      - Scott Adams replied to FannyRD's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Gluten free phosphate binders for dialysis patients

      You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance"...
    4. Scott Adams
      - Scott Adams replied to Cecile's topic in Related Issues & Disorders
      2

      Symptoms

      Living with celiac disease can be especially hard when you’re in a smaller town and don’t have many people around who truly understand it, so you’re definitely not alone in feeling this way. Ongoing fatigue, joint pain, and headaches are unfortunately common in people with celiac disease, even years after diagnosis, and they aren’t always caused by gluten ...
    5. trents
      - trents replied to Cecile's topic in Related Issues & Disorders
      2

      Symptoms

      Welcome to the celiac.com community, @Cecile! It is common for those with celiac disease to develop sensitivity/intolerance to non-gluten containing foods. There is a high incidence of this with particularly with regard to dairy products and oats but soy, eggs and corn are also fairy common offenders. Like you eggs give me problems depending on...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,180
    • Most Online (within 30 mins)
      7,748
    Eldret419
    Newest Member
    Eldret419
    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

    • RMJ
      Do Gluten Enzymes actually work?

      By RMJ · Posted

      If you successfully digest gluten with enzyme supplements so it won’t give you side effects, your challenge won’t be worthwhile because the digested fragments of gluten also won’t stimulate antibody production or cause intestinal damage.  
    • FannyRD
      Gluten free phosphate binders for dialysis patients

      By FannyRD · Posted

      Thanks for the resource! I will check it out!
    • Scott Adams
      Gluten free phosphate binders for dialysis patients

      By Scott Adams · Posted

      You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Symptoms

      By Scott Adams · Posted

      Living with celiac disease can be especially hard when you’re in a smaller town and don’t have many people around who truly understand it, so you’re definitely not alone in feeling this way. Ongoing fatigue, joint pain, and headaches are unfortunately common in people with celiac disease, even years after diagnosis, and they aren’t always caused by gluten exposure alone. Many people find that issues like low iron, low vitamin D, thyroid problems, other autoimmune conditions, or lingering inflammation can contribute to that deep exhaustion, so it’s reasonable to push your doctor for more thorough blood work beyond just vitamin B. As for eggs, it’s also not unusual for people with celiac disease to develop additional food intolerances over time; tolerating eggs as an ingredient but not on their own can point to sensitivity to the proteins when they’re concentrated. Some people do better avoiding eggs for a while, then carefully testing them again later. Most importantly, trust your body—if something consistently makes you feel awful, it’s okay to avoid it even if it’s technically “allowed.” Many of us have had to advocate hard for ourselves medically, and connecting with other people with celiac disease, even online, can make a huge difference in feeling supported and less isolated.
    • trents
      Symptoms

      By trents · Posted

      Welcome to the celiac.com community, @Cecile! It is common for those with celiac disease to develop sensitivity/intolerance to non-gluten containing foods. There is a high incidence of this with particularly with regard to dairy products and oats but soy, eggs and corn are also fairy common offenders. Like you eggs give me problems depending on how they are cooked. I don't do well with them when fried or scrambled but they don't give me an issue when included in baked and cooked food dishes or when poached. I have done some research on this strange phenomenon and it seems that when eggs are cooked with water, there is a hydrolysis process that occurs which alters the egg protein such that it does not trigger the sensitivity/intolerance reaction. Same thing happens when eggs are included in baked goods or other cooked dishes since those recipes provide moisture.  So, let me encourage you to try poaching your eggs when you have them for breakfast. You can buy inexpensive egg poacher devices that make this easy in the microwave. For instance:  https://www.amazon.com/Poacher-Microwave-Nonstick-Specialty-Cookware/dp/B0D72VLFJR/ Crack the eggs into the cups of the poacher and then "spritz" some water on top of them after getting your fingers wet under the faucet. About 1/4 teaspoon on each side seems to work. Sprinkle some salt and pepper on top and then snap the poacher shut. I find that with a 1000 watt microwave, cooking for about 2 minutes or slightly more is about right. I give them about 130 seconds. Fatigue and joint pain are well-established health problems related to celiac disease.  Are you diligent to eat gluten-free? Have you been checked recently for vitamin and mineral deficiencies? Especially iron stores, B12 and D3. Have you had your thyroid enzyme levels checked? Are you taking any vitamin and mineral supplements? If not, you probably should be. Celiac disease is also a nutrient deficiency disease because it reduces the efficiency of nutrient absorption by the small bowel. We routinely recommend celiacs to supplement with a high potency B-complex vitamin, D3, Magnesium glycinate (the "glycinate" is important) and Zinc. Make sure all supplements are gluten-free. Finally, don't rule out other medical problems that may or may be associated with your celiac disease. We celiacs often focus on our celaic disease and assume it is the reason for all other ailments and it may not be. What about chronic fatigue syndrome for instance?
×
×
  • 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.