trents

But you didn't answer my question. When you consume gluten, is there an identifiable reaction within a short period of time, say a few hours?

Welcome to the forum, @Hmart! There are other medical conditions besides celiac disease that can cause villous atrophy as well as some medications and for some people, the dairy protein casein. So, your question is a valid one. Especially in view of the fact that your antibody testing was negative, though there are also some seronegative celiacs.

So, do you get reactions every time you consume gluten? If you were to purposely consume a slice of bread would you be certain to develop the symptoms you describe?

Welcome to the forum, @Judy M!

Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer. 

Celiac disease has a genetic component but also an "epigenetic" component. Let me explain.

There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life.

About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease.

In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life.

Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance.

There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease.

I hope this helps.

Welcome to the forum, @catsrlife!

Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 

1 hour ago, Gigi2025 said:

No, I've not been diagnosed as celiac.  Despite Entero Labs being relocated to Switzerland/Greece, I'll be doing another test. After eating wheat products in Greece for 4 weeks, there wasn't any reaction.  However, avoiding it here in the states.  

Thanks everyone for your responses.  

You state in an earlier post that you don't have celiac disease. Here in this post you state you will "be doing another test". What will this test be looking for? What kind of celiac disease testing have you had done? If you have used a Entero Labs it sounds like you have had stool testing done for celiac disease which is not widely accepted as a valid celiac disease diagnostic testing method. Have you had blood antibody testing for celiac disease done and do you realize that for antibody testing to be valid you must have been eating generous amounts of gluten for a period of weeks/months? 

This topic has come up before on this forum and has been researched. No GMO wheat, barley and rye are commercially available in the USA. Any modifications are from hybridization, not laboratory genetic modification. Better toleration of wheat, barley and rye products in other countries is thought to be due to use of heirloom varieties of these cereal grains as opposed to the hybrids used in the USA which contain much larger amounts of gluten.

Is he physically abusive to you?

Is this man the father of your children?

You would think any business would see the wisdom of honoring a $50 gift certificate on the basis of customer satisfaction alone, apart from any questions about software glitches.

So there was no physical, plastic card involved, correct?

Was the card itself lost or just the record or both?

Yes, some people do get withdrawal from gluten but gluten withdrawal doesn't usually cause gut pain. Maybe more like general body aches and discomfort. We have articles on gluten withdrawal on this forum. You might do a search for them.

Applesauce is very acidic and some brands have added vitamin C (ascorbic acid) which makes them more acidic. This can damage the stomach lining if you eat it too often. Especially if your stomach lining is already compromised.

Ibuprofen inhibits the body's ability to rebuild the stomach's protective mucosal lining. That's why it can cause peptic ulcers. As strange as it may sound, low level irritation/inflammation stimulates the body to rebuild the stomach lining. There are two steps in this rebuilding process known as COX 1 and COX 2. Ibuprofen represses both COX 1 and COX 2. Celecoxcib, a prescription anti inflammatory, inhibits only COX 2, making it less likely to cause damage to the gut lining.

@KathyR37, I would suspect that in addition to gluten intolerance, you have other food intolerances/sensitivities. This is very common in the celiac community. The most common offenders are oats, dairy, soy, corn and eggs with dairy and oats being the big two. Have you considered this? Have you tried keeping a food diary to detect patterns?

7 hours ago, bombier said:

This doesn't answer your question but I'm not sure if you know that this intolerance is passed down from mother to child through Cord blood and or breast milk.

Celiac disease is an autoimmune condition with a genetic base. The the potential for developing the disease is inherited but remains latent until triggered by some stress event. Thus, there is an epigenetic component to celiac disease. Once the genes are awakened from dormancy, celiac reactions are triggered by the ingestion of gluten.

Tammy, in the food industry, "gluten free" doesn't mean the same thing as "no gluten". As Scott explained, the FDA (Food and Drug Administration) allows food companies to use the "gluten-free" label as long as the product does not contain more than 20 ppm (parts per million) of gluten. This number is based on studies the FDA did years ago to determine the reaction threshold for those with celiac disease. And the 20 ppm figure works for the majority of celiacs. There are those who are more sensitive, however, who still react to that amount. There is another, stricter standard known as "Certified Gluten Free" which was developed by a third party organization known as GFCO which requires not more than 10 ppm of gluten. So, when you see "GFCO" or "Certified Gluten Free" labels on food items you know they are manufactured with a stricter standard concerning gluten content.

Having said all that, even though you may read the disclaimer on a food item that says the spices may contain wheat, barley or rye (the gluten grains), you should be able to trust that the amount of gluten the spices may contain is so small it allows the total product to meet the requirements of gluten free or certified gluten free labeling. I hope this helps.

Paracetamol, aka, acetaminophen (Tylenol) just does not do anything for me as far as pain relief. It does help with fevers, though.

Welcome to the forum, @jessysgems! How does this affect you? What do you do to address it? Do you have to get up and consume something sweet?

Has prednisone or some other systemic steroid been tried that might quiet her immune system down for a while?

I have two acquaintances with Lyme's disease. It is a wicked condition that has long fingers.

Have you considered putting her on the autoimmune protocol diet? 

Welcome to the forum, @Colleen H! NSAIDs can damage small bowel villi like celiac disease does and can also cause peptic ulcers. It would be safer to use a prescription COX 2 inhibitor like celecoxcib which are easier on the gut. But even they should be used as sparingly as possible. 

Apparently, the new GI doc is not buying the previous diagnosis of celiac disease and feels the need to confirm it for himself/herself. I would look for another doctor. 

Start by reading the ingredient label for wheat, barely or rye or anything that might be derived from them. I would also call the manufacturer and ask that question. Usually, the thing that they cannot guarantee is that there is no cross contamination from equipment the ingredients are processed on but unless you are a super sensitive celiac that may not be an issue.

Tammy, who is saying they aren't safe for celiacs? Are you saying that is stated on the product packaging itself or that you are reading where people on forums like this one are claiming they aren't safe? Who is "they"?

Welcome to the forum, @Jay Heying!

What is the reason your doctor is recommending this?

32 minutes ago, Julie 911 said:

No she didn't because if I want to ask I have to pay 700$ for 1 hour appointment so I couldn't even ask. I read that fillers like cornstash can alter the result and tylenol contains it so that's why I tried to find someone who can answer. 

I don't see how cornstarch could alter the test results. Where did you read that?