Confused over results and the need for additional testing

[Lucy58]

Hello everyone,

I'm hoping for some insight. For years I've had constant stomach pain (around and above my belly button), nausea, constipation, bloating and gas, low energy, vomiting, lower back pain, pelvic pain, bouts of diarrhea, unexplained rashes. I've been anemic and have had low potassium levels all my life. I also sometimes have trouble swallowing, and "brain fog." I've had every test under the sun and many of them attributed my symptoms to menopause, GERD, ulcerative colitis and other digestive disorders. No conclusive answers ever or conditions ruled out. I've been on Pantoprazole, which has done nothing to relieve the pain. Sometimes Mylants helps. 

Most recently though, I have gotten worse, and between February -May 2022, I have lost 20 pounds which made my doctor concerned. 

2 weeks ago, I have the worst vomiting and diarrhea I've experienced. I've been on the BRAT diet (per doctor order), but I still feel like crap and my stomach still hurts, I'm bloated and nauseous. I had the Tissue Transglutaminase IGA test last week and my value is <1.23 U/mL. I have no idea what that means but my doctor had ordered a "confirmatory Endomysial antibody" test next (?). I'm also going to have a coloscopy (it's due), an endoscopy, an Upper and Lower GI, and additional blood tests.

I'm confused for these tests. <1.23 U/mL is "normal" I thought.  Pancreatitis, diverticulitis, IBS, GERD, liver disease and hepatitis have all been ruled out so far. Therefore, I'm at a loss for all these tests my doctor has ordered. Meanwhile, my stomach still hurts, I can only eat bland foods in small portions and I'm still feeling miserable.

Any insight is appreciated. Thank you.

[trents]

Welcome to the forum, Lucy58!

Have you considered that you might not have celiac disease but NCGS (Non Celiac Gluten Sensitivity) instead. They share many of the same symptoms but NCGS does not damage the small bowel villi so there are no antibodies produced and there is no diagnostic test for NCGS. Celiac disease must first be ruled out before a conclusion that one has NCGS, which, by the way is 10-12 times more common than celiac disease.

But first things first. You must first finish all testing designed to check for celiac disease. Some people's immune system responds atypically who actually do have celiac disease so a "full celiac panel" should be ordered and an endoscopy with biopsy may be in order as well. It is good that your doctor ordered the Endomysial antibody test but there are others that probably should have been run as well. Here is a primer for celiac blood antibody testing: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

By the way, when you post lab results you also need to post the reference ranges for positive vs. negative used by the particular lab that did the analysis. Different labs use different reference ranges. It is not standardized.

But here's a question for you that is important: Before your antibody blood tests were done, had you already been eating gluten free or eating a low gluten diet? If so, you may have invalidated the testing and caused it to produce negative results.

[Lucy58]

Hi and thank you for replying. At the time of testing I was eating food with gluten all the time. I never gave any thought to being gluten sensitive. I thought my ulcercame back.  Bread and pasta my downfall, as any good Italian.🙂 

I have other tests coming in the next few weeks which my doctor said will clarify if i do, indeed, have celiac disease. 

Thank you for your insight.

[Wheatwacked]

The BRAT diet (Bananas, Rice, Applesauce, Toast) Opps. You've been tested for everything but Gluten Sensitivity (celiac disease or NCGS) and your treatment diet includes toast (gluten) as part of your cure.

You might try Dr Haas's diet for recovery. THE VALUE OF THE BANANA IN THE TREATMENT OF CELIAC DISEASE SIDNEY V. HAAS, M.D. It was used from 1920 to 1950 to treat celiac before gluten was identified as the cause. It fell out of favor because once healed the patient was returned to a "normal diet" with gluten so the gains would often be lost. As they say " the baby with the bath water"

>Heretofore it has been impossible in the severe cases to give any carbohydrate without damage, whereas banana is not only well tolerated, but rapidly changes the entire picture of the disease to one of well being. <

Table 1.—The Typical Diet:

• Plain milk should not be given
• Albumin milk. (whey)
• Pot cheese (milk 16 oz.) Farmers or Cottage Cheese (curds)
• Banana.
• Orange.
• Vegetables.
• Gelatin.
• Meat.
• Fats should be avoided as carefully as carbohydrates.

Edited May 30, 2022 by Wheatwacked

[trents]

1 hour ago, Wheatwacked said:

The BRAT diet (Bananas, Rice, Applesauce, Toast) Opps. You've been tested for everything but Gluten Sensitivity (celiac disease or NCGS) and your treatment diet includes toast (gluten) as part of your cure.

You might try Dr Haas's diet for recovery. THE VALUE OF THE BANANA IN THE TREATMENT OF CELIAC DISEASE SIDNEY V. HAAS, M.D. It was used from 1920 to 1950 to treat celiac before gluten was identified as the cause. It fell out of favor because once healed the patient was returned to a "normal diet" with gluten so the gains would often be lost. As they say " the baby with the bath water"

>Heretofore it has been impossible in the severe cases to give any carbohydrate without damage, whereas banana is not only well tolerated, but rapidly changes the entire picture of the disease to one of well being. <

Table 1.—The Typical Diet:

• Plain milk should not be given
• Albumin milk. (whey)
• Pot cheese (milk 16 oz.) Farmers or Cottage Cheese (curds)
• Banana.
• Orange.
• Vegetables.
• Gelatin.
• Meat.
• Fats should be avoided as carefully as carbohydrates.

Wheatwacked, are you advocating the diet in Table1? I do not believe avoiding fats is a good idea. Fat soluble nutrients require fats.

[Wheatwacked]

I won't say advocate, but my anorexia got worse so I'm taking it for a test drive and already like it. I am using Daisy full fat 4% Cottage cheese (around a pound a day and 6 to 8 ounces of 80-20 ground beef. Back then all dairy was pasture fed. No fat was a thing of the future. The bananas do entice me to eat. Bowl of cottage cheese with diced tomato, red bell peppers, cucumber, Flora pitted olives (no vinegar, no pits to surprise) and hard-boiled eggs once or twice a day. Bananas have potassium, eggs have choline. One of these days I'll do the totals. Originally the plan was to get the kid eating and reintroduce "normal" diet, but as an adult, just expand the foods as tolerated keeping Gluten Free. It was designed to replace standard formula and I think this was the best choice for infants before Nutramigen in the 70's. Anyway, gut feels pretty good right now.

 

[CatrionaB]

Maybe you have IGA deficiency, this is more prevalent in people with celiac disease, so they should have also tested you for IGA deficiency, this could be the cause of the missing antibodies, if this is the case they should do other blood tests to find celiac antibodies, after the blood tests you can also get an endoscopy. Your symptoms sound like you probably have celiac disease! There is no test for non-celiac gluten sensitivity, this is simply diagnosed after ruling out everything else, but celiac disease is usually more severe. Removing dairy from your diet can also help, as it can cause additional inflammation.