Many Gluten Symptoms, But Negative Tests?

[JohnTummyAche]

I am new to the forums but was wondering if people on here would possibly be able to provide some insight into the symptoms I am feeling and if they potentially could be Celiac.

I am a 24 year old male who suffers from hypoparathyroidism, hypothyroidism, and digestion issues including lactose intolerance. My mother also suffers from Celiac.

About 5 years ago when I began having digestion symptoms, blood tested low for iron, and also began experiencing brain fog/fatigue, especially after eating. I was given a full celiac blood panel which all came back negative, but I pushed to still have the endoscopy biopsy done to verify which also came back negative. I was diagnosed with IBS, put on iron supplements and that was it.

However, recently I have had a number of abnormal blood tests (low potassium, elevated liver enzymes and billirubin). On top of this, a stool sample was recently done and I suffer from fat malabsorption and some inflammatory markers were also elevated through the stool test. I then had a liver MRI done, no problems found. A Celiac blood panel was done again, and again came back negative.

I realize the blood tests came back negative, but I still feel gluten could be the likely culprit here especially with my family history of celiac (mother). I decided to go gluten free, now 2 weeks and counting but I still see no sort of improvement. A bigger issue I also face, especially lately is fatigue and brain fog after eating, which has not changed at all even after I started eating gluten free. I am beyond frustrated and just want this all to be figured out, I feel like I am so young for my body to be deteriorating like this.

I was wondering if anyone had any thoughts or suggestions?

[Skylark]

It does sound like you have a food intolerance. It's possible to have a strong gluten intolerance but not be celiac. Usually 2 weeks strictly gluten-free is enough to notice some improvement from gluten intolerance but I'd give it more time. There's a slim chance you are seronegative celiac and the biopsy just missed the damage or even was read incorrectly. I agree your symptoms are very consistent with celiac. It takes longer to feel better gluten-free if you're celiac, more like 2-4 months. You don't have the biopsy results, do you? Also, have other inflammatory bowel diseases like Crohn's, ulcerative colitis, and microscopic colitis been properly ruled out? Crohn's in particular can look a lot like celiac. Also your Dr. should consider SIBO, though it's harder to test and diagnose.

For starters, dairy, soy, and corn are really common intolerances around here. You could try going off those as well as gluten. Dairy is particularly troublesome.

There's also the option of going onto a full intolerance/allergy elimination diet. A common one is lamb, white rice, peeled pears, and iceberg lettuce. Those are foods that people don't tend to be intolerant/allergic to. If you can't afford lamb, eat turkey. If you feel better on that very limited diet after a week or two, you know that you are dealing with a food intolerance. That's how I picked up my own gluten problems, plus intolerances to dairy and soy. If you don't feel better on that diet, you may be intolerant to fructose in the pears, complex carbs from the rice, or dietary amines in the lamb. Sensitivity to sugars and carbs is a common underlying cause of IBS and it's thought to be from bacterial imbalance. Fructose malabsorption will also cause IBS symptoms.

[JohnTummyAche]

Hi Skylark,

Thanks for the Response! I actually just met with my gastro doc today to get the results of my recent small bowel MRI. It turns out everything was negative for crohn's. Since my last endoscopy was 5 years ago, he decided to take another look to see if anything has changed so I'm going in next week to have another biopsy done. Dare I say it, but I am actually keeping my fingers crossed that I have celiac so at least I have an answer to all of these issues and stress I've been dealing with all these years.

Since I've been gluten free for 2 weeks now, and my test is next Tuesday, should I start eating gluten between now and then to make sure the biopsy is accurate? I've read if you go gluten free too long that can cause false negatives for celiac?

[beachbirdie]

I am new to the forums but was wondering if people on here would possibly be able to provide some insight into the symptoms I am feeling and if they potentially could be Celiac.

I am a 24 year old male who suffers from hypoparathyroidism, hypothyroidism, and digestion issues including lactose intolerance. My mother also suffers from Celiac.

About 5 years ago when I began having digestion symptoms, blood tested low for iron, and also began experiencing brain fog/fatigue, especially after eating. I was given a full celiac blood panel which all came back negative, but I pushed to still have the endoscopy biopsy done to verify which also came back negative. I was diagnosed with IBS, put on iron supplements and that was it.

However, recently I have had a number of abnormal blood tests (low potassium, elevated liver enzymes and billirubin). On top of this, a stool sample was recently done and I suffer from fat malabsorption and some inflammatory markers were also elevated through the stool test. I then had a liver MRI done, no problems found. A Celiac blood panel was done again, and again came back negative.

I realize the blood tests came back negative, but I still feel gluten could be the likely culprit here especially with my family history of celiac (mother). I decided to go gluten free, now 2 weeks and counting but I still see no sort of improvement. A bigger issue I also face, especially lately is fatigue and brain fog after eating, which has not changed at all even after I started eating gluten free. I am beyond frustrated and just want this all to be figured out, I feel like I am so young for my body to be deteriorating like this.

I was wondering if anyone had any thoughts or suggestions?

With hypoparathyroidism, there could be some other things out of whack. Do you have normal calcium levels? Usually Hypoparathyroid presents with low calcium, but it is possible to have high or normal calcium and have symptoms related to parathyroid dysfunction. Is there a cause for your low parathyroid?

You might ask them to test for a lot of nutritional deficits (look at all minerals and electrolytes)...though testing for B12, Vit. D, sodium and potassium are common, you probably have to ask specifically for magnesium; sometimes a magnesium deficiency will impact the parathyroid. Perhaps they could do your copper/zinc as well.

How is your thyroid treatment managed? Are you on medication for it? Is thyroid surgery the cause of your parathyroid deficit by chance?

[Skylark]

Hi Skylark,

Thanks for the Response! I actually just met with my gastro doc today to get the results of my recent small bowel MRI. It turns out everything was negative for crohn's. Since my last endoscopy was 5 years ago, he decided to take another look to see if anything has changed so I'm going in next week to have another biopsy done. Dare I say it, but I am actually keeping my fingers crossed that I have celiac so at least I have an answer to all of these issues and stress I've been dealing with all these years.

Since I've been gluten free for 2 weeks now, and my test is next Tuesday, should I start eating gluten between now and then to make sure the biopsy is accurate? I've read if you go gluten free too long that can cause false negatives for celiac?

Great! I'm glad you're getting good care. If gluten doesn't make you terribly ill, I would recommend going back to eating it for the week leading up to your test. Then you can start freely playing with diets while your Dr. works on what else needs to be ruled out.

[JohnTummyAche]

With hypoparathyroidism, there could be some other things out of whack. Do you have normal calcium levels? Usually Hypoparathyroid presents with low calcium, but it is possible to have high or normal calcium and have symptoms related to parathyroid dysfunction. Is there a cause for your low parathyroid?

You might ask them to test for a lot of nutritional deficits (look at all minerals and electrolytes)...though testing for B12, Vit. D, sodium and potassium are common, you probably have to ask specifically for magnesium; sometimes a magnesium deficiency will impact the parathyroid. Perhaps they could do your copper/zinc as well.

How is your thyroid treatment managed? Are you on medication for it? Is thyroid surgery the cause of your parathyroid deficit by chance?

I've been seeing a endocrinologist who has me currently taking Calcium and Vitamin D supplements to offset my parathyroid. I am also on Thyroid meds for my hypothyroidism. Recently, my potassium was discovered to be low as well, so more tests are currently being done through this doc as well.