Negative Blood Test, Positive Symptoms

[lianhua]

I'm new here, extremely confused and not sure what to do.

A few months ago, I started experiencing very strange GI symptoms, most noticeably excessive gas, painful bloating (felt like menstrual cramps but since I'm on an oral contraceptive which regulates my periods to 1 every 3 months I knew that couldn't be it), constipation and steatorrhea (aka the worst thing in the world for me). It was so bad at times that it seemed like I was passing nothing but fat.

Knowing someone who has celiac, and knowing some of her former symptoms, I suspected it immediately, and made an appointment with my doctor for tests. She ordered a full celiac panel, as well as basic metabolic panel, thyroid, CBC, sedementation and Vitamin D.

The celiac panel came back negative:

Open Original Shared Link

Open Original Shared Link - Uploaded with Open Original Shared Link's Open Original Shared Link

Which prompted my doctor to decide that it's not celiac, but just a "sensitivity." And basically decide that since the blood test came back negative, there was no need for a biopsy.

However, three other results stood out: my calcium and Vitamin D are both low, and my TSH (thyroid) is high (indicating possible hypothyroidism).

From my research, these are all consistent with celiac (not to mention steatorrhea is usually a pretty dead giveaway).

Some other things I've been experiencing (some of them for years), which I'm not sure are related or not but I'm starting to get really suspicious about:

- bone/joint pain (especially in my knees)

- skin issues (psoriasis on my elbows and seborrheic dermatitis on my scalp, so the doctors have called them)

- general fatigue

- anxiety & depression

My doctor did recommend a gluten-free diet, and I've been on one for a few weeks now, with only a couple of accidents. Things seem to be getting better -- today I noticed that the steatorrhea is pretty much gone, for example. I've even read that symptom improvement alone is enough for a positive diagnosis (or used to be? I've been reading too much).

I'm so frustrated. I just want answers. This seems too severe to just be a "sensitivity" - a sensitivity to me is a stomachache or something, like my boyfriend gets from his lactose intolerance if he drinks milk. Not such horrible gas, constipation and steatorrhea that I'm basically locked in the bathroom crying in pain.

Am I out of my mind to think it's something worse than a sensitivity? What can I do from here?

[koolkat222]

I wouldn't worry about any official diagnosis. Most doctors (in my experience) are pretty quick to dismiss what they can't quickly diagnose.

You know that gluten hurts your body in a big way. Bottom line, you need to stay away from it in order to feel good regardless of what the doctor says.

Take care, and I'm glad you're feeling better.

[mushroom]

I'm new here, extremely confused and not sure what to do.

A few months ago, I started experiencing very strange GI symptoms, most noticeably excessive gas, painful bloating (felt like menstrual cramps but since I'm on an oral contraceptive which regulates my periods to 1 every 3 months I knew that couldn't be it), constipation and steatorrhea (aka the worst thing in the world for me). It was so bad at times that it seemed like I was passing nothing but fat.

Knowing someone who has celiac, and knowing some of her former symptoms, I suspected it immediately, and made an appointment with my doctor for tests. She ordered a full celiac panel, as well as basic metabolic panel, thyroid, CBC, sedementation and Vitamin D.

The celiac panel came back negative:

Open Original Shared Link

Open Original Shared Link - Uploaded with Open Original Shared Link's Open Original Shared Link

Which prompted my doctor to decide that it's not celiac, but just a "sensitivity." And basically decide that since the blood test came back negative, there was no need for a biopsy.

However, three other results stood out: my calcium and Vitamin D are both low, and my TSH (thyroid) is high (indicating possible hypothyroidism).

From my research, these are all consistent with celiac (not to mention steatorrhea is usually a pretty dead giveaway).

Some other things I've been experiencing (some of them for years), which I'm not sure are related or not but I'm starting to get really suspicious about:

- bone/joint pain (especially in my knees)

- skin issues (psoriasis on my elbows and seborrheic dermatitis on my scalp, so the doctors have called them)

- general fatigue

- anxiety & depression

My doctor did recommend a gluten-free diet, and I've been on one for a few weeks now, with only a couple of accidents. Things seem to be getting better -- today I noticed that the steatorrhea is pretty much gone, for example. I've even read that symptom improvement alone is enough for a positive diagnosis (or used to be? I've been reading too much).

I'm so frustrated. I just want answers. This seems too severe to just be a "sensitivity" - a sensitivity to me is a stomachache or something, like my boyfriend gets from his lactose intolerance if he drinks milk. Not such horrible gas, constipation and steatorrhea that I'm basically locked in the bathroom crying in pain.

Am I out of my mind to think it's something worse than a sensitivity? What can I do from here?

Hello and welcome to the board.

You don't have to be a diagnosed celiac in order to suffer terrible symptoms from gluten. Also, the testing is not totally reliable; there is about a 20% error rate on both the blood testing and biopsy. Some people who test negative initially eventually go on to test positive later. Others have been diagnosed based on severity of symptomatology and positive response to the diet. There are those of us on here who have never had any testing - we went gluten free of our own accord because we could not convince anyone to test us.

It really doesn't make a lot of difference what you call it though - celiac, gluten intolerance, gluten sensitivity - the treatment is the same for all, a gluten free diet. I recognize, though, that for some the piece of paper with an actual, specific diagnosis of celiac on it is important. However, sometimes it is just not possible to get, and you have to accept the more fuzzy diagnosis. Either way, the pain and effects are pretty much the same and the necessity of avoiding gluten is the same. With a negative result, you never know whether or not it is a false negative, and whether you are at risk for developing the other autoimmune diseases which accompany celiac. You already have an autoimmune disease, psoriasis, which is associated with celiac. You also have bone and joint pain which could be early rheumatoid arthritis, or what I have, psoriatic arthritis. Low calcium and Vit. D are typical signs of a gut which is not absorbing nutrients properly, fatty stool is a really common symptom, and hypothyroidism (indicated by your high TSH) also goes along with the complex of symptoms as you are obviously aware. Also, you note that "things seem to be getting better" on a gluten free diet. This would be sufficient indication to me that you are on the right path, that eating gluten free is your answer.

If you really feel like you need to do something more, you can either find another doctor who is willing to do the endoscopy with biopsy and/or order the genetic testing to see if you carry celiac genes (suggestive but not diagnostic), or stool testing can be ordered thrugh Enterolab. This company tests for gluten antibodies, other food sensitivities, and also does genetic testing. It can be ordered online and you don't need a doctor to do it. But when all is said and done, you should definitely try the gluten free diet for a good 2-3 months no matter what the results of the tests. You may be agreeably surprised.

[sb2178]

Well, the major reasons for the formal diagnosis:

- medical letter stating diet required

- repeat testing to confirm the diet is working

- follow up on other risk factors (nutritional deficiencies, early osteoporosis, thyroid, etc)

- ensuring you don't have any other digestive issues that need txt (Crohn's, fructose malabsorption, etc)

- making YOU stick to the diet faithfully

It seems like you have a pretty decent doc who is open and responsive to all of the above. Since the treatment (diet) is working, you basically have what you need. B-12 testing is good to have as well, and maybe magnesium and iron if you haven't had them.

I think that gluten issues are a complex web, and celiac is just the most well understood iteration. You may or may not have very early celiac disease, or you may have a version of the disease that leads to other types of inflammation/autoimmunity. It's frustrating, but the only way to find out for sure would be to continue to eat gluten until you have severe damage to whatever tissues and your overall health. And that is a BAD option, no?

If you absolutely need some biochemical testing for psychological satisfaction, you can try to get a biopsy, stool or saliva testing. The diagnostic value of stool/saliva is not well understood, though. The diet trial is really your gold standard test, answer, and treatment.

[VitaminDGirl]

Knowing someone who has celiac, and knowing some of her former symptoms, I suspected it immediately, and made an appointment with my doctor for tests. She ordered a full celiac panel, as well as basic metabolic panel, thyroid, CBC, sedementation and Vitamin D.

The celiac panel came back negative:

Open Original Shared Link

Open Original Shared Link - Uploaded with Open Original Shared Link's Open Original Shared Link

I am still trying to find out if I'm celiac, or just gluten sensitive, but wanted to address the low Vit. D and possibly hypo-thyroidism. I was D deficient I found out about 3-4 months ago. But many people are low with D and it's not always an absorption problem, it's lack of sunlight and supplementation. You can do the research, and from my own, I learned that Vitamin D acts as a hormone when it gets into our system. So once you raise and keep your D level way up, it's possible it could affect your thyroid numbers. I am refusing to go on a thyroid med until I can stabilize my D level at a high level. By the way, with 10,000 ius a day of a D3 supplement and adequete sunlight without sunscreen, I raised my levels way up within 8 weeks. Drs are just now learning how much D levels affect our bodies, and esp. in regards to pain. check out www.drrohde.com for some good vitamin D guidelines for supplementing based on your blood result and look up the vitamin D council online.

I hope and pray you can find some answers.

Your post and its responses have been helpful to me.

[David Tremblay]

I'm new here, extremely confused and not sure what to do.

A few months ago, I started experiencing very strange GI symptoms, most noticeably excessive gas, painful bloating (felt like menstrual cramps but since I'm on an oral contraceptive which regulates my periods to 1 every 3 months I knew that couldn't be it), constipation and steatorrhea (aka the worst thing in the world for me). It was so bad at times that it seemed like I was passing nothing but fat.

Knowing someone who has celiac, and knowing some of her former symptoms, I suspected it immediately, and made an appointment with my doctor for tests. She ordered a full celiac panel, as well as basic metabolic panel, thyroid, CBC, sedementation and Vitamin D.

The celiac panel came back negative:

Open Original Shared Link

Open Original Shared Link - Uploaded with Open Original Shared Link's Open Original Shared Link

Which prompted my doctor to decide that it's not celiac, but just a "sensitivity." And basically decide that since the blood test came back negative, there was no need for a biopsy.

However, three other results stood out: my calcium and Vitamin D are both low, and my TSH (thyroid) is high (indicating possible hypothyroidism).

From my research, these are all consistent with celiac (not to mention steatorrhea is usually a pretty dead giveaway).

Some other things I've been experiencing (some of them for years), which I'm not sure are related or not but I'm starting to get really suspicious about:

- bone/joint pain (especially in my knees)

- skin issues (psoriasis on my elbows and seborrheic dermatitis on my scalp, so the doctors have called them)

- general fatigue

- anxiety & depression

My doctor did recommend a gluten-free diet, and I've been on one for a few weeks now, with only a couple of accidents. Things seem to be getting better -- today I noticed that the steatorrhea is pretty much gone, for example. I've even read that symptom improvement alone is enough for a positive diagnosis (or used to be? I've been reading too much).

I'm so frustrated. I just want answers. This seems too severe to just be a "sensitivity" - a sensitivity to me is a stomachache or something, like my boyfriend gets from his lactose intolerance if he drinks milk. Not such horrible gas, constipation and steatorrhea that I'm basically locked in the bathroom crying in pain.

Am I out of my mind to think it's something worse than a sensitivity? What can I do from here?

I had the bone joint pain, psoriasis on elbows and knees, depression, anxiety, fatigue, etc for years and years. I was diagnosed with 20 different "conditions" and put on various medications. The joint pain progressed to full blown psoriatic arthritis at the age of 42 and I was put on Humira and methotrexate, which lower your immune system to critically low levels so your broken immune sysytem doesn't attack your joints. It also opens up your body to every free radical out there -brilliant medicine. Three years ago I went to an Iridologist on a whim and was diagnosed (for $85 btw), as Gluten intolerant and immediately cut out all gluten from my diet. I am now 100% cured - no meds, great mentally, great physically and I can wiggle my fingers with the best of them. My point - I tried and tried all kinds of testing, including biopsy of sm intestine, and was always told that I had no gluten intolerance. The kicker is that when I showed up for a one year check-up with my RA (arthritis) doctor, I looked great and when I told him that I had stopped taking the meds he prescribed 8 months earlier and instead gone gluten-free he stood up (without a second's hesitation), extended his hand for a handshake and said "well, I guess I won't be seeing you anymore...." Morals of the story: 1. little is known about auto-immune illnesses (which you have) by the medical community - very little. 2. The testing seems to be terrible. 3. Even if the testing was excellent, the ethics governing a truthful response are highly questionable. (I'm not saying EVERY doctor EVERYwhere, so those of you in love w/your drs relax) 4. You know your body better than any person alive. Do elimination dieting until you get results and be patient - it takes time. My guess is that your also blood type "O" but that's another discussion.

[Skylark]

I've had two different really good doctors tell me that symptom improvement alone is enough for a diagnosis. They say it's hard to find antibodies and hard to get a positive biopsy even if a person really seems to have a lot of celiac symptoms. Both these doctors told me that a bloodwork/biopsy diagnosis doesn't matter if the person is willing to eat gluten-free and stick with it.

[lianhua]

Thank you all for your wonderful replies; I'm feeling much less phased about it now. I discovered the term "non-celiac gluten intolerance (or sensitivity)" and I'm happily attaching myself to it.

Now it's all about perfecting the diet and getting better! It's pretty tough since my boyfriend and I don't tend to cook at home very often, but most restaurants seem to be pretty helpful. Some of the waiters even know to follow up with the lactose/casein question, which always makes me so happy! The knowledge is spreading.

Even more, my company has catered lunch 3x a week, and the caterers are very eager to help as well - I think they consider it a bit of a challenge to cook for me! (Plus the CEO of the company has personally told them they have to pay special attention to their menus for me, which makes me feel special!)

I'm feeling much more optimistic about all of this now, in part thanks to your replies so early on in my adventure. Thank you again, so much!