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Dr. Arun Phophalia
Dr. Arun Phophalia, Doctor (MD)
Category: Health
Satisfied Customers: 35454
Experience:  MBBS, MS (General Surgery), Fellowship in Sports Medicine
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Can you have a gluten intolerance even if your blood work

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Can you have a gluten intolerance even if your blood work for it is negative? I have had severe ongoing health issues for almost a year and have not been diagnosed. GI symptoms as well as symptoms that mimic reactive hypoglycemia (but my blood sugar is always normal). I stopped eating gluten for a while and felt a little better, now I have been eating it again and feel worse than I have in a long time. I haven't eaten it today but I ate some yesterday, today I feel extremely faint and tense/jittery, my eyes are having trouble focusing,I'm a little nauseous (but not as bad as yesterday), and I just feel so sick all over. I started feeling like my blood sugar was low and I ate a little but I'm still lightheaded and my heart is racing.

Greetings Lindsay.

Seronegative (where blood tests are not positive) celiac disease / gluten intolerance has been reported in 6-9% of patients. You may consider getting an upper gastrointestinal endoscopy, which is the criterion standard to help establish a diagnosis of celiac disease. With your symptoms and manifestations, this is the most important investigation for establishing it. If a stool examination has not been done; that would be recommended. Following are advised;

1) Stool exam; The typical bulky, greasy appearance and rancid odor of stools suggest malabsorption of fat. A Sudan stain of the stool would confirm fat droplets. A 72-hour fecal fat collection is also helpful.

2) Oral tolerance tests like lactose intolerance test would also be advised. Excretion of breath hydrogen, a product of bacterial fermentation of unabsorbed lactose, is often elevated in celiac sprue.

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Customer: replied 4 years ago.

Okay, thank you. I was wondering if there are any other possible causes for my symptoms. The symptoms similar to reactive hypoglycemia are very troubling and debilitating.

You are very welcome, Lindsay.

Your doctor should investigate for following (if not yet done);

1) thyroid disorders
2) low albumin
3) low calcium
4) low potassium
5) low magnesium.
6) other malabsorption syndrome
7) protein loosing enteropathy
8) immunoglobulin A deficiency

It is privilege assisting you.

Dr. Arun
Customer: replied 4 years ago.

Thanks, ***** ***** it. I have had pretty extensive thyroid testing, I was actually borderline hyperthyroid for a while, with a low TSH of 0.34 (range 0.45-4.5) and a slightly high total T4 of 12.1; fee T4 was 1.4 (range 0.8-1.8), and I felt like I had a lot of the symptoms and that was causing me to need to eat more. But last time I had my thyroid tested my free T4 was only 1.14 and my TSH was 0.71.

Albumin and calcium have actually been leaning toward high... is this normal or what kind of problems could it indicate? My potassium has been normal too, and I haven't had magnesium tested.

You are most welcome.

You may get following;

1) thyroid antibodies to rule out thyroiditis.
2) parathyroid hormonal assay and parathyroid scan for high albumin and calcium.
Customer: replied 4 years ago.

My thyroid antibodies tests were normal, and so was parathyroid. Could anything else cause these?

I would consider a diagnosis of eosinophilic gastroenteritis.
Customer: replied 4 years ago.

Well the GI symptoms haven't been that bad since summer and I don't have a high eosinophil count... the first time I had it checked it was 0 and then 0.5 on another test. And would that explain the need to eat frequently?

Hormonal issues are than the most likely explanation. One need to reinvestigate as initially hormone levels may be normal and only repeated probing would reveal it later on.
Customer: replied 4 years ago.

What types of hormonal issues? My thyroid seems normal after repeated testing but I have a lot of thyroid symptoms, seems like I have both hyper and hypo symptoms.

Adrenal hormones would be necessary and repeat of the parathyroid hormone assay and a radio isotope scan of parathyroid.
Customer: replied 4 years ago.

Thanks. Do the other symptoms seem like they could be an adrenal disorder?

they can be. When we read the symptoms in medical text books or Internet, individual symptoms would not match to the general medical information as they are collection of literature.
Customer: replied 4 years ago.

Ok, are there any other possible hormonal/endocrine causes of these symptoms? The most troubling symptoms are the lightheadedness and the need to eat frequently, those are more constant/bothersome than my GI symptoms.

I would also look for;

Postprandial hypotension: After meals, a large amount of blood is drawn into the intestines, and this causes hypotension, leading to dizziness, nausea, etc. This may occasionally occur in younger persons. You can read up here:

Idiopathic Reactive Hypoglycemia: This is due to a allergic reaction to some foods. You have to pay careful attention to which foods this brings it on. You can read up here:

The blood sugar may remain near normal and do not fall significantly thus it is difficult to diagnose.
Customer: replied 4 years ago.

Thank you. I definitely think I have idiopathic reactive hypoglycemia. My sugar is usually around 125-130 after eating a small meal, then two hours or so later it's about 100, and that's when I get symptoms (although I do sort of have a vague sense of lightheadedness a lot of the time anyway). There was one time I ate and it was 99 right after eating, and 79 two hours later. It seems higher on average during the day than at night, would there be any reason for that? I think I have another condition other than the hypoglycemia but I think that is a big part of how I'm feeling.

The only reason can be hormonal for the slightly higher blood sugar. I agree that there can be a concomitant hormonal issue and idiopathic reactive hypoglycemia. The individuals behave far differently than the medical literature.
Customer: replied 4 years ago.

Thanks. Do my symptoms seem more like low or high adrenaline? Sometimes I feel like I have too much, I feel jittery and panicked and my blood pressure is slightly high, other times I feel very tired. Is there any way to manage reactive hypoglycemia besides eating small meals? I already eat many small meals throughout the day.

You are welcome. An adrenal issue can be the explanation. Apart from dietary measures for reactive hypoglycemia; acupuncture, acupressure, meditation, yoga all can help in it and hormonal issue.
Customer: replied 4 years ago.

Okay, I will try those things. Do the symptoms I have listed sound like low or high cortisol? Because I feel like I have some symptoms of both. I also tried drinking some wine tonight and it made me feel lightheaded almost instantly after a small glass, I haven't drank alcohol in over a year. Is this probably from reactive hypoglycemia or adrenal issues?

Your symptoms can be due to low cortisol. Medical literature not a correct way to determine the low or high symptoms as there is lot of overlapping. The blood work would determine it. The reaction to alcohol also does not give clue to diagnosis.
Customer: replied 4 years ago.

Thank you. I was wondering if low cortisol or other hormonal issues could lead to a sense of weakness, kind of like the body weakness you get when you have a cold or flu but less severe. The weakness usually occurs when I haven't eaten but sometimes it's more constant. It's really only been in the past two weeks that I've been experiencing this particular symptom.

The newer symptoms would warrant reinvestigations. They may or may not be related to the previous diagnosis or ailment or may be transient which may resolve spontaneously.

It is privilege assisting you.

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Customer: replied 4 years ago.

Thank you. It seems to only come along with the other symptoms.The reactive hypoglycemia (or symptoms that fit with it) seems to be getting worse, I'm having trouble getting rid of the lightheaded feeling. Could this potentially be anything serious? My doctors haven't been able to figure it out at all and it's getting really debilitating.

I can understand the severity of your symptoms. Though this is unlikely to be serious.
Customer: replied 4 years ago.

Thank you. I am wondering if you can think of any other possible conditions so I can discuss it with my doctor.

My symptoms in order of severity are the lightheadedness/symptoms that mimic reactive hypoglycemia, and having to eat constantly > GI symptoms (mainly just nausea and gas) > fatigue (which is usually only severe in the beginning of the day and gets better throughout the day, I am more awake at night), and then the other symptoms that pop up every now and then such as the weakness. Sometimes I get slight pains in my ribs and back, which I got really severely when I had the viral infection in April.

I would think of Fibromyalgia for these symptoms.
Customer: replied 4 years ago.

Really? The pain is not severe at all, I hardly ever have pain. Can fibromyalgia cause the lightheadedness and need to eat frequently? Lately I am feeling worse and worse. I just got really lightheaded AFTER eating and it's so hard to control.

I was thinking of Fibromyalgia and reactive hyperplasia concomitantly.
Customer: replied 4 years ago.

What is reactive hyperplasia and how could it cause those symptoms? I looked it up and could only find things about swollen lymph nodes. I have had a swollen lymph node in my neck at least since last summer, sometimes it's bigger and sometimes it's smaller, lately it's been really small.