Another Confusing Discrepancy Between Blood Tests And Biopsy Results

[DevsMama]

Hi Folks,

I am new to this board and would love some help. For the last two months, the docs have been trying to dx my problems. My symptoms include being full after a couple bites, bloating, indigestion, extreme fatigue, brain fog, and occasional heart burn. I can only eat jello, rice, broth, gluten-free corn flakes and rice crispy type cereal. I am 5'4" and weigh 99lbs. I have lost 7 lbs in 2 months. All these symptoms came on suddenly 2 months ago.

The GI doc tested for celiacs and I tested positive with the tissue transglutiminase IgA. My results were 2.2 (normal is <.9). I had an endoscopy last week, and today the doc says it came back normal. He is now saying I don't have celiacs, and that the high IgA number can be attributed to the fact that I have RA, in which my body produces a wide range of antibodies. From my brief reading into the celiac literature this doesn't seem accurate. I am so confused and feel so lost. He is now suggesting I undergo a gallbladder test, even though an U/S of my gallbladder came back normal. I am prompting him to test me for lactose and fructose intolerance. He says he will.

Has anyone had my symptoms? How can I proceed? I don't feel like my doc is on board. Any suggestions? Anyone know of an excellent GI in San Francisco Bay Area?

Thanks for your help. I have a 6 y.o. to take care of and I am barely managing.

Jenna

[beachbirdie]

Hi Folks,

I am new to this board and would love some help. For the last two months, the docs have been trying to dx my problems. My symptoms include being full after a couple bites, bloating, indigestion, extreme fatigue, brain fog, and occasional heart burn. I can only eat jello, rice, broth, gluten-free corn flakes and rice crispy type cereal. I am 5'4" and weigh 99lbs. I have lost 7 lbs in 2 months. All these symptoms came on suddenly 2 months ago.

The GI doc tested for celiacs and I tested positive with the tissue transglutiminase IgA. My results were 2.2 (normal is <.9). I had an endoscopy last week, and today the doc says it came back normal. He is now saying I don't have celiacs, and that the high IgA number can be attributed to the fact that I have RA, in which my body produces a wide range of antibodies. From my brief reading into the celiac literature this doesn't seem accurate. I am so confused and feel so lost. He is now suggesting I undergo a gallbladder test, even though an U/S of my gallbladder came back normal. I am prompting him to test me for lactose and fructose intolerance. He says he will.

Has anyone had my symptoms? How can I proceed? I don't feel like my doc is on board. Any suggestions? Anyone know of an excellent GI in San Francisco Bay Area?

Thanks for your help. I have a 6 y.o. to take care of and I am barely managing.

Jenna

Get the results of your blood tests and your biopsy report. Just because you have RA, doesn't mean THAT is what elevated your antibodies. He may not have done enough tests, and they may not have done enough biopsy samples, or they may not have interpreted well.

Have you ever tried to go gluten free?

If so, did you notice a difference in how you felt?

It could be something else of course, but since celiac comes with a much less invasive treatment than gall bladder surgery, you want to make sure you are not among those who got their gall bladders out and were still sick. There are quite a few of them around here!

Welcome! There are lots of wonderful people here who will be able to help, and give different ideas to think about; glad you found your way here.

[Teri Lou]

At this point it probably wouldn't hurt to try gluten free just to see if made a difference...also what meds are they treating your RA with....I have lupus and know some I totally can't tolerate cause they cause so much GI inflammation I get symptoms like yours..have you had any recent med changes? or are the ones you are on known to cause GI irritation? Autoimmune stuff is AWFUL to figure out sometimes so I would attack it from all angles. Talk to your rheumatologist about your symptoms as well as the GI people (but don't adjust meds yourself!!). How are your blood markers besides the IgA?

Good luck- I hope they figure it out and you are feeling better soon!

[MitziG]

If he only tested TTG IGA that is far from being accurate celiac testing. Before you start the diet, I would insist he do a FULL panel.

It needs: Total IGA

TTG IGG

Deamidated Gluten Peptides

Endomysial Antibodies

Anti-Gliadin IGA and IGG

[squirmingitch]

You mentioned gluten-free corn flakes. If you are already gluten-free or if you were gluten-free or gluten light prior to the blood work OR the endoscopy then that can skew both tests to negative.

[Cara in Boston]

My blood test was positive and my biopsy was negative. My doctor technically diagnosed me with "gluten intolerance" since he said I needed a positive biopsy for a celiac diagnosis.

My son (7) has celiac, and all my symptoms went away once I was gluten free. It seems so silly that the doctor cannot diagnose me with celiac disease. Biopsies can be wrong. Maybe they didn't take enough samples, maybe they missed the damaged areas, maybe there is not yet enough damage - it does not mean you do not have celiac disease.

I would think that with your medical history (RA) and the fact that your symptoms seemed to come on suddenly (I can pinpoint my symptoms to my second pregnancy) all point to celiac disease being a likely cause.

If you are not going to pursue further testing, I would go strictly gluten free for 3 months and see if your symptoms don't go away. Positive blood test and positive response to the diet would indicate that your doctor is WRONG.

Cara

[DevsMama]

Hi All,

Thanks for responding. Here are some answers to your questions.

Prior to the biopsy last Thursday, I was still consuming gluten to try to ensure an accurate result. The next day, I cleaned out my kitchen of gluten containing foods, and stopped eating it. Saturday and Sunday I still felt awful (but was hosting family for my son's bday party and was stressed). Monday, Tuesday and Weds, I felt a bit better and was able to eat butter or avocado on my rice and enjoyed some chicken. On Weds night, I had some whipped cream, and some decaf chai (Tazo brand, both gluten-free), and immediately started burping, feeling full, and eventually threw up in my mouth. Since then I have felt miserable.

They are treating my RA with 200mg 2X/day Celebrex, and 40mg 2x/mo Humira. I've been on Humira for over a year (though I was on a sister medication Enbrel for 11 yrs w/o s/e). I have been on celebrx for 13 yrs. I've only had heartburn issues, very intermittently.

The other bloodwork I've had done includes IgG, but it was normal. I've had all sorts of stool tests, h. pylori test, screening for pancreatitis (because of elevated lipase levels, but amylase was fine). I will check in to see if they'll do a full panel.

They scheduled me for a stomach emptying test and a gallbladder test.

How long does it take to eliminate symptoms by going gluten-free? I am committed to it, if it'll help. I just want them to test me for fructose malabsorption or lactose intolerance since I had that huge reaction to the whipped cream. Should I also try to go fructose and lactose free? I feel like I wouldn't have anything to eat since juice is something I can still get in me via jello. I am so confused!

Jenna

[Takala]

Don't be so quick to blame just the whipped cream, as I have had terrifically bad reactions to that supposedly "gluten free" tea, even in the alleged flavors that are said to be safe, and I won't touch that chai mix ever again. It could be a combination reaction.

Daily use of prescription strength anti inflammatories, even in the newer categories, are also notorious for causing digestion/gastric problems long term.

Open Original Shared Link

If you are gluten intolerant or celiac, that lactose intolerance is what happens as a side effect, and sometimes goes away or becomes less on a gluten free diet as the lining of the gut heals, so some people can tolerate non lactose dairy again, such as safe yogurt or aged cheeses.

Fructose intolerance is more like your total diet is unbalanced, and that is a reaction to it, if you're not getting enough vegetables and proteins, you then tend to eat too many of the other categories.

[DevsMama]

Thanks to the heads-up about Chai mix. I usually make my own out of fresh ginger and spices, but I was out for my son's birthday and was trying to eat something to join in the festivities. Now I know!

thanks for the info re: fructose intolerance. I probably don't have it then, because prior to my struggles, I was eating 8-10 servings of veggies a day, chicken, brown rice, etc. I eat no processed foods. Seriously -- all organic, some from my own garden. I soak my own beans. I eat better than 95% of the general public. It is ironic that now all I can eat is refined foods.

Ug.

[ravenwoodglass]

I think you are wise to give the diet a good strict try now that celiac related testing is done. Do try to go with as much whole unprocessed food as you can and do make sure that the meds and supplements you are taking are gluten free.

Things can be up and down for a bit when we first go gluten free but hopefully you will see some improvement soon.

My arthritis was in remission within 6 months on the diet. I hope the same happens for you but that is not the case for everyone. It is hard when we are sick and trying to be a good parent so hopefully things will get better for you soon.