Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Celiac Disease With Minimal Gi Symptoms?


Light

Recommended Posts

Light Rookie

Hi,

I have loose stools but just once a day. I don't have bloating or other GI symptoms... However, I have other symptoms that I wanted to run by you guys. (I am waiting for the results of my celiac disease screen)

--Terrible brain fog.

--Nutritional deficiencies (Vitamin D, Vitamin B12, borderline low thiamin) that may be indicative of malabsorption.

--Symptom onset/exacerbation often after meals.

--Lack of coordination during episodes ("Gluten Ataxia"?)

--Considerable fatigue

-- Hyperparathyroid (a year ago anyway...)

--Chronic headaches

--Cracking joints (don't know if this is a celiac disease symptom but I noticed others posting about this and I thought I'd mention it.

What do you think, could I have Celiac without major GI symptoms?

Thanks,

Mike


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



Celiac.com Sponsor (A8-M):



Lisa Mentor
Amyleigh0007 Enthusiast

My son did! His only GI symptom was terrible C. His other main symptoms were leg cramps and slow growth.

Light Rookie

Thanks for the link to the article, Momma Goose. That's interesting... I just started reading the site. Is there a subset of members here who don't have prominent GI symptoms?

Also, can I change my diet after doing my Celiac screen or are there possibly more tests? It's really hard for me to keep eating wheat, etc knowing that it may be contributing to my problems.

Thanks,

Mike

Lisa Mentor
Thanks for the link to the article, Momma Goose. That's interesting... I just started reading the site. Is there a subset of members here who don't have prominent GI symptoms?

Also, can I change my diet after doing my Celiac screen or are there possibly more tests? It's really hard for me to keep eating wheat, etc knowing that it may be contributing to my problems.

Thanks,

Mike

Hi Mike,

Some here have been diagnosed with Celiac subsequent to other things such as diabetes, fibro., RA and other things. Many here only have neurological issues.

You might be lucky and have an informed doctor. Unfortunately, many of us have not. If you test positive for Celiac, yes, you can begin or continue with the gluten free diet. If not, a GI may want to do an endoscopy/biopsy for further testing for Celiac.

But the bottom line is, if you feel better on the diet, you most likely have Celiac Disease, a gluten intolerance or a gluten allergy. All require a diet of gluten free foods. A positive dietary response is also a diagnosis.

Many here are self-diagnosed and feel good about it. Not knowing too much about you, I hope this is helpful. There is a vast amount of information on this site. Take a walk around. And welcome.

Light Rookie

Thanks, Amyleigh...

How's your son doing now?

Light Rookie

Thanks for the information and welcome, Liaa. I will take a look around. I should have my results on Monday. My Dr. said that some people show improvements on gluten-free diets even if they don't test positive. I think I'll avoid the endoscopy, as I have issues with anesthesia.


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



Celiac.com Sponsor (A8-M):



lizard00 Enthusiast

Hi there and welcome!

My most serious symptom was headache/fatigue. My mom swore up and down I didn't have Celiac b/c I didn't have diarrhea. The list of symptoms is long, not necessarily GI either. Another lady I know with Celiac only got tested because of unexplained weight loss. Gluten doesn't make her feel sick at all.

ksymonds84 Enthusiast

Hi Mike,

I have several Celiac friends who were diagnosed with Celiac and couldn't believe they were because of no GI symptoms. One had horrible low back pains and wanted to sleep all the time. Another, dietary deficiencies with early osteoporosis. And finally, the other is my BIL who was diagnosed because of itchy rash (HD). So it is possible to have celiac with your symptoms. One thought is that loose stools even once per day is not normal. If the GI is working properly you shouldn't have loose stools, something is irritating your intestines even though mildly. Welcome to the board!

Green Eyes Rookie

Hey Mike,

I must add my own story!!! I was diagnosed out of left field!!! I had no clue... I had a history of anemia but was controlled with iron supplements. I guess I can consider myself one of the lucky ones because I wasn't sick with horrible symptoms.

I believe a gluten free diet will be what helps you!!!

Jennifer

Jenny (AZ via TX) Enthusiast

Mike,

I had many of the symptoms you have and very little GI symptoms. --

Terrible brain fog - didn't even realize how bad until gluten free

--Nutritional deficiencies - very low ferritin.

--Lack of coordination during episodes ("Gluten Ataxia"?) - I felt like I was leaning to the right.

--Considerable fatigue - still have but recently starting taking thyroid

--Chronic headaches - still get them occasionally and even migraines

--Cracking joints (don't know if this is a celiac disease symptom but I noticed others posting about this and I thought I'd mention it. - I have this too

I was a "regular" girl although the stools were soft and ususally only went once a day. It was a fluke that I was diagnosed due to an emergency room visit. Otherwise, I didn't think I felt that bad. But I have to tell you, that I do feel better. I didn't realize that my stomach felt uncomfortable most days until after being gluten free a while. Then I realized that I didn't have that feeling in my tummy anymore. It's hard to explain. I can't believe how much better I feel. I also had some depression which is mostly gone!

So, you can have celiac without magor GI symptoms.

Hope this helps.

Light Rookie

Thank you all for the input! Based on this information I think I may continue with the diet regardless of my test results (should have those tomorrow). Today was day 1... I had some horrible corn based bread but got through it. Looks like it's back to the store to look for other gluten free bread products...

Does non-alcoholic beer have gluten in it? I got hit hard with the brain fog right after having part of an NA beer.

Thanks, guys!!

-Mike

elye Community Regular

Hi, Mike!

I was another silent celiac - - before I went gluten-free, I had NO obvious symptoms, with the exception of low iron. I think it's quite amazing that I was diagnosed at all, really, considering the number of poor people with horrible GI distress, stunted growth, migraines, etc., who go years and years before a proper diagnosis!

Now that my lower intestine has healed, I get all of the classic GI symptoms when I accidentally get glutened: diahrrea, bloating, cramps. This may well happen with you .. . . kind of a drag, but at least you become very motivated not to cheat, and to be very careful about cross-contamination! :)

Alcohol-free beer contains gluten. You need to look for beer that is clearly labelled "gluten-free"....Redbridge is one that you can get in the States, and a lot of people seem to like it.

Amyleigh0007 Enthusiast

Light- He is a different kid now that he is gluten free. He is the picture of health. Thanks for asking!

ravenwoodglass Mentor
Does non-alcoholic beer have gluten in it? I got hit hard with the brain fog right after having part of an NA beer.

Thanks, guys!!

-Mike

As mentioned NA beer does have gluten. I used to drink it all the time and couldn't understand why it would still give me a hangover. I got pulled over one night and almost got a DWI while drinking NA beer. If they hadn't had a breathalizer I would have gone to the pokey. My ataxia was severe back then and trying to convince the police officers I wasn't drunk was not easy, after all I couldn't walk a straight line and I reeked of beer. :blink:

The celiac Sprue Association has a good beginning the diet guide, you can find it here:

Open Original Shared Link

I like that it divides the allowed items into the beginning phase, for after you are newly diagnosed, and an expanding stage, for after you have healed a bit. It does list safe alcoholic beverages.

Light Rookie

Thanks for all of the great information, everyone. I may have additional questions and comments but am pretty foggy at the moment. Just looked at the link above and I had forgotten that I love potato bread so that may be an option. I've got to have carb alternatives:)

I just got my results. I didn't write down the name of the test but it was one of the antibody tests and my result was 5. Based on this value, any guess as to which test this was? Any from the trenches, comments on this test, it's validity, etc? Should I see if the proof is in the pudding and go for the diet or ask for additional blood tests?

Thanks,

-Mike

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,070
    • Most Online (within 30 mins)
      7,748

    Sashley
    Newest Member
    Sashley
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.6k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      @KRipple, thank you for the lab results from your husband's celiac disease blood antibody testing. The lab result you share would seem to be the tTG-IGA (Tissue Transglutaminase IGA) and the test result is in excess of 10x normal. This is significant as there is an increasing tendency for physicians to grant a celiac disease diagnosis on the basis of antibody testing alone when the scores on that particular test exceed 10x normal. This trend started in the UK during the COVID pandemic when there was tremendous pressure on the medical system over there and it has spread to the USA. The tTG-IGA is the centerpiece of celiac disease blood antibody testing. All this to say that some doctors would grant a celiac disease diagnosis on your husband's bloodwork alone and not feel a need to go forward with an endoscopy with biopsy. This is something you and your husband might wish to take up with his physicians. In view of his many health issues it might be wise to avoid any further damage to his small bowel lining by the continuing consumption of gluten and also to allow healing of such to progress. The lining of the small bowel is the place where essentially all of our nutrition is absorbed. This is why celiac disease when it is not addressed with a gluten free diet for many years typically results in additional health problems that are tied to nutritional deficiencies. The millions and millions of tiny finger-like projections that make up the nutrient absorbing surface of the small bowel lining are worn down by the constant inflammation from gluten consumption. In celiac disease, the immune system has been tricked into labeling gluten as an invader. As these finger-like projections are worn down, the efficiency of nutrient absorption becomes more and more compromised.
    • KRipple
      Thank you so much! And sorry for not responding sooner. I've been scouring the hospital records and can find nothing other than the following results (no lab info provided): Component Transglutaminase IgA   Normal Range: 0 - 15.0 U/mL >250.0 U/mL High   We live in Olympia, WA and I will be calling University of Washington Hospital - Roosevelt in Seattle first thing tomorrow. They seem to be the most knowledgeable about complex endocrine issues like APS 2 (and perhaps the dynamics of how APS 2 and Celiacs can affect each other). His diarrhea has not abated even without eating gluten, but that could be a presentation of either Celiac's or Addison's. So complicated. We don't have a date for endoscopy yet. I will let my husband know about resuming gluten.    Again, thank you so much for sharing your knowledge with me!
    • trents
      Scott makes a good point about the prednisone. It has a general suppressing effect on the immune system. Don't misunderstand me. In view of your husband's several autoimmune afflictions, it would seem to be an appropriate medication therapy but it will likely invalidate endoscopy/biopsy test results for celiac disease.
    • Scott Adams
      I also want to mention that using prednisone would likely also make the endoscopy results invalid. This steroid will cause gut healing and could mask the damage caused by celiac disease. 
    • Jess270
      This sounds to me like histamine intolerance. Some foods have more or less histamine. processed or aged meats, fermented food like yoghurt or kimchi and bread (yeast), spinach, eggplant and mushroom are high in histamine. Other foods like tomatoes are histamine liberators, they encourage your mast cells to release histamine, which can also trigger the reactions you describe, flu like symptoms, joint pain, urinary tract irritation, rash, stomach upset, nausea, diarrhoea & fatigue. I had liver pain like you describe, as part of the intolerance is usually a sluggish liver that makes processing all the histamine difficult. There are multiple possible root causes of histamine intolerance, usually it’s a symptom of something else. In my case, leaky gut (damaged gut wall)caused by undiagnosed celiac, but for others it’s leaky gut caused by other things like dysbiosis. Some people also experience histamine intolerance due to mould exposure or low levels of DAO (the enzyme that breaks down histamine in the gut). I’d try a low histamine diet & if that doesn’t improve symptoms fully, try low oxalate too. As others have suggested, supplements like vitamin d, b, l-glutamine to support a healthy gut & a good liver support supplement too. If you’re in a histamine flare take vitamin c to bowel tolerance & your symptoms will calm down (avoid if you find you have oxalate intolerance though). Best of luck 
×
×
  • Create New...