Waiting on food sensitivity test results…..

[Jill74]

I’m 14 months post op from gastric sleeve surgery and all has gone well until about 7-8 months ago…when the weight loss stopped and recently i noticed how swollen my belly is. Ive been eating gluten because i found this bread with a high protein content….plus ive never been diagnosed or told i have celiac  or an intolerance….however my dna report seems to suggest its highly likely. Anyway felt great right up until about 2 weeks ago…..noticed weight up…..like 7 pounds in a month and 2 pounds in 24 hours. Im extremely active and have been since surgery…always getting over 10k steps a day….sometimes 20k….very busy. Im so anxious to take this test to see if its gluten or possibly more thing adding to my swollen belly. Im also an autoimmune patient as well. So….while i wait on my results is there anything i can do to relieve the swelling? Im taking probiotics, digestive enzyemes and drinking lots of water. I appreciate any feedback.

[trents]

Welcome to the forum, Jill74!

If you are reacting to gluten and want to get tested for Celiac disease you must continue to consume gluten in order for the testing to be valid. What's more, if your celiac blood antibody testing is positive it is likely you will also be asked to confirm the results through a follow-up procedure involving an endoscopy with biopsy of the small bowel lining. This would also require you to be eating gluten. Unfortunately, there is not much you can do to alleviate the unpleasant symptoms you describe that you suspect may be caused by gluten. This might help, however: The Mayo Clinic guidelines for pretest gluten consumption is two slices of wheat bread daily or the gluten equivalent for 6-8 weeks leading up to the blood antibody testing and for 2 weeks leading up to the endoscopy/biopsy. So, what I am saying is that  if you are eating more gluten-containing foods than two slices of wheat bread a day, you might be able to cut back some and still have valid testing. Perhaps that would alleviate some of the unpleasant symptoms.

If you willing to forego an official diagnosis then you could just start practicing gluten-free eating and see if your symptoms improve. By the way, what are your other autoimmune disorders?

It is also possible you have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but for which there is no testing. celiac disease must first be ruled out. But with the celiac potential genes you have, I would assume you have celiac disease. However, NCGS is 10x more common.

[Jill74]

Thank you so much for the information! 

[trents]

Keep us posted.

[patty-maguire]

I second everything trents said with a couple of additions. 
Re DNA testing, about 30% of people in the US have the genes for celiac but only about 1% actually have the disease, so you’re doing the right thing to go ahead with testing.

In addition to potentially cutting back on gluten as suggested, all you can really do is treat the symptoms. Ginger tea or mint tea can help with digestive upset. A warm compress on the belly helps. You can take an OTC pain killer like Tylenol or Advil, but go easy, they can cause constipation. 
 

All the best. 

[Jill74]

From what i gather genetics has a lot to do with it….and i have several family members diagnosed….however nobody pegged me for it because im the only one to gain weight and swell up like a balloon…the rest are all rail thin. So…..nobody gave me second look. For now I’m starting off with a food sensitivity test…..guessing this will flag it plus some other foods I think I react to as well. Honestly, don’t care what it says…my body is enough of an indicator to steer clear of gluten…..it’s whatever else I’m guessing I react to I’d like to be more aware of. I appreciate the feedback. 

[patty-maguire]

Yup,  you're absolutely right.  Genetic has a lot to do with it and having family members diagnosed is one more indicator that it's likely you have it.  I was the same, a little overweight so none of my doctors even thought of celiac.

Food sensitivity testing is a bit controversial and not terribly reliable.  There are lots of false positives and false negatives.  At best, these tests are a starting point for an elimination diet. If you want a celiac diagnosis then you need to get the tTG-IgA test that your doctor can order for you.  If positive it will likely be followed up by an endoscopy to confirm.

You're also absolutely correct that you don't need any of this in order to eliminate gluten from your diet if you're pretty certain that's what's causing you trouble,  Many people forego the diagnosis because continuing to eat gluten throughout testing is just too difficult.  There are some advantages to having a formal diagnosis. 

- The main one is that you're less likely to second guess yourself.  It's a difficult diet to stick to and you'll be less likely to cheat or backslide if you have a diagnosis.  For someone with gluten sensitivity, a little taste here and there may cause discomfort, but for someone with celiac, you're doing damage and putting yourself at risk for some serious diseases.

- There is follow up monitoring that's necessary for celiac patients: nutritional levels, bone density, tTG levels etc.  It's much easier to get this follow up care with a formal diagnosis.

- You'll get taken more seriously by friends and family, although since you have diagnosed family members this may not be an issue for you.

As for other food sensitivities that go along with celiac, dairy is the most common.  Many also have issues with eggs and soy.  That may give you a starting point.

[trents]

24 minutes ago, Jill74 said:

From what i gather genetics has a lot to do with it….and i have several family members diagnosed….however nobody pegged me for it because im the only one to gain weight and swell up like a balloon…the rest are all rail thin. So…..nobody gave me second look. For now I’m starting off with a food sensitivity test…..guessing this will flag it plus some other foods I think I react to as well. Honestly, don’t care what it says…my body is enough of an indicator to steer clear of gluten…..it’s whatever else I’m guessing I react to I’d like to be more aware of. I appreciate the feedback. 

Food sensitivity tests are often unreliable because what the test tube shows you are reacting to doesn't often match well with what you actually experience. Plenty of false positives. Realize also that celiac disease is an autoimmune disorder and as such won't show up on allergy tests. It engages an entirely different pathway than allergies. With celiac disease, ingestion of gluten doesn't trigger an allergic response but an autoimmune response that causes inflammation in the lining of the small bowel that, over time, does damage to that lining and compromises the ability of the small intestine to absorb nutrients. "Sensitivity" is a rather amorphous term that is used differently by different people but to me it just means someone's body reacts negatively in some way to a food.

If you have several family members diagnosed with celiac disease, and you have the genetic potential for it and you have symptoms compatible with celiac disease, may I ask why you are starting with food sensitivity testing rather than celiac antibody testing? The former can't diagnose celiac disease and the latter is specific for celiac disease. I would go withe the celiac disease antibody testing first and then, if you still suspect you have a sensitivity to other foods because the gluten free diet diet doesn't eliminate all the symptoms, go for food sensitivity testing.

[Jill74]

I’m going the route of a sensitivity test because I suspect other issues. I understand about being diagnosed with celiac… I’ve also struggled in the past trying to get a Dr willing to test me… plus I can’t stomach the idea of exposing myself to that much gluten… I just would rather give it up and believe that’s what it is. I’m positive there are other issues… hence the test. But I’m aware of how the formal diagnosis is made….. sounds brutal… wish there was a better way. But I already have several autoimmune issues… hashimotos and raynauds…. So guessing this just adds to the fun! I already feel relief today and I’m about 48 hours gluten free and I’ve been pushing fluids… so there’s that. 

[trents]

Got it! Your rational is sound. This might help you get off to a good start in truly achieving gluten free status:

 

[Wheatwacked]

12 hours ago, Jill74 said:

But I already have several autoimmune issues… hashimotos and raynauds…

vitamin D 😧 The Implication of Vitamin D and Autoimmunity: a Comprehensive Review

Quote

However, increasing evidence demonstrates a strong association between vitamin D signaling and many biological processes that regulate immune responses. The discovery of the vitamin D receptor in multiple immune cell lineages, such as monocytes, dendritic cells, and activated T cells credits vitamin D with a novel role in modulating immunological functions and its subsequent role in the development or prevention of autoimmune diseases. 

The limitation of research into vitamin with a cutoff of 30 mg/ml I believe stems from a manufacturing error in 1950's UK baby food. The dose of vitamin D was 1000 times the safe dose, causing an epidemic of baby calcification and deaths. I think they added milligrams (mg) to the food instead of micrograms (mcg). 

Both bariatric surgery and Celiac Disease bring with them malabsorbtion so after 7 months you are running low and that will present with many symptoms. Of particular importance in Celiac are D, B1, B3, B5, B12 and choline. Iodine and potassium, zinc, lithium.  Should I take vitamins and supplements after weight loss surgery?

Some have related onset of Celiac Disease to trauma or infectious disease. The common factor is low vitamins and minerals. The surgery may have triggered the Celiac, or Celiac was the trouble all along. On average it seems to take 10 years of misdiagnosis to finally accept gluten as the root cause. My son's was triggered when he was weaned. Mine was triggered when I tried to abstain from alcohol at 63.. Turned out that GFD was the instant cure to 30 years of alcoholism, amoung 19 other symptoms. Without the daily alcohol flush keeping the bad bacteria at bay it overwhelmed the good guys.

At 10,000 IU of vitamin D a day it took from 2015 to 2020 to get my vitamin D up to 80 ng/ml. I don't know where I started but in 2018 it was only 47 ng/ml. Now it is steady at 80.