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Negative Bloodwork

OHtummytroubles

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OHtummytroubles Rookie
OHtummytroubles
Posted

Hello everyone. First post here. I appreciate everyone taking the time to read this. It has been a long haul and I finally made my way to the Cleveland Clinic. After speaking to my Gastroenterology doc there she stated I have IBS...and its just my personality ( why I have all the tummy pains ). She did however run the celiac panel and some other routine blood tests. The celiac panel was negative but I was just wondering if withalot of symptoms and a ttg iga of 16 if I should still think gluten is an issue?

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ravenwoodglass Mentor
ravenwoodglass
Posted

False negative celiac panels are not uncommon. If you are not going to have a biopsy done to check for celiac then go ahead and try the diet strictly for a bit and see if it helps. Do not go gluten free until all testing for celiac is done though.

cassP Contributor
cassP
Posted

our emotional issues CAN have an effect on our digestive tract- but i am so tired of these docs diagnosing EVERYONE with "IBS"....

i say 95% of the time- there is a cause that is NOT emotions.

your ttg at 16 is high enough to suggest you are at least "gluten sensitive"... did the doc order any other tests? the ttg is just one test of many

and like ravenwood said- stay on the gluten IF you're getting more complete tests done... and if not- you should definitely try gluten free.... i bet 25 million bucks that you will feel better

Takala Enthusiast
Takala
Posted

Emotional issues can be caused by the malnutrition of silent celiac or gluten intolerant damage. I mean really, what do they think "cause" emotions, The Sleepytime Fairy sprinkling pixie dust on the pillows every night which means you wake up fogged out, over wrought, and swinging back and forth ? What is a vitamin, mommy ? How does that missing effect my hormone producing glands ? duh ! Read Pub Med, ***** it !

Too bad more docs can't put 2 and 2 together, and get Four Food Groups out of it- meat, vegetables, fruit, and nuts/seeds.

If the doctors are dead - ending you, you get a genetic test OTC mail order, and see if you're more likely one of us, or you can just try the diet and see what happens.

Skylark Collaborator
Skylark
Posted

Hello everyone. First post here. I appreciate everyone taking the time to read this. It has been a long haul and I finally made my way to the Cleveland Clinic. After speaking to my Gastroenterology doc there she stated I have IBS...and its just my personality ( why I have all the tummy pains ). She did however run the celiac panel and some other routine blood tests. The celiac panel was negative but I was just wondering if withalot of symptoms and a ttg iga of 16 if I should still think gluten is an issue?

You should absolutely try the diet. If you are disinclined to stick to a difficult diet without a "formal" diagnosis, you might talk to your doctor about a biopsy first.

OHtummytroubles Rookie
OHtummytroubles
Posted
  • Author

Yes...I agree with most of you that doctors are way too often diagnosing people with "IBS" without further looking into what may be causing the "IBS". The Cleveland Clinic was a "last stop" for me. I had seen a physician, as well as a Gastroenterologist before who was unable to tell me anymore than "you have IBS". I was hoping the Cleveland Clinic would be more thorough. I have suffered pain, indigestion, bloating, terrible gas....etc since the birth of my child 5 years ago. No amount of medicine helps, and I am at a point of feeling like every day my life is being impacted to the extreme because I live in constant stomach upset. Recurrent trips to an ER - who cannot diagnose the problem anyhow - is what my life has come down to. Nothing shows up on any tests...anywhere. I had a scope done in 2006, but that was after I had lost 10 lbs and wasn't eating for over a month. I had a colonoscopy done in August that showed no damage or concern. I will most likely try the Gluten Free Diet strictly again for a while and see if symptoms improve. Unfortunately 5 years of damage is hard to reverse. I was doing Gluten Free for about 6 months from November through June of this year. It helped then, but I still had alot of gas build-up that was causing me pain. I would like formal diagnosis so that doctors that I may deal with in the future will stop acting like I am just an ancy individual and it must be my "nerves". I am anxious because my stomach hurts and I cannot get it to stop. I can handle the bloating, Gas, and indigestion...I would just love for the sharp pains to subside.

At the Cleveland Clinic the doctor ordered a CBC (all good levels), and a hepatic panel (again all normal levels), as well as a Celiac Panel. The Celiac Panel was as follows (got the results off an online chart option):

IgA 310 Reference Range: 78 - 391 mg/dL

Endomysial IgA Abs <1:10 Reference Range: Negative < 1:10 Dilution

Gliadin IgG Abs 3 <20 - Units

Gliadin IgA Abs 4 <20 - Units

Transglutaminas IgA 16 <20 - Units

Reference Range for the Gliadin/Ttg IgA:

Negative : < 20 Units

Weak Positive : 20 - 30 Units

Moderate Pos to Strong Pos: >30 Units

Interpretation Celiac: In the presence of normal IgA levels, all negative antibody results

indicate low probability of celiac disease. However, clinical correlation is required to rule out celiac disease.

Skylark Collaborator
Skylark
Posted

That sounds familiar. :( Doctors told me I had a "nervous stomach".

For me gluten-free did the trick. Some celiacs are also pretty sensitive to milk, either lactose or casein. If you have trouble with fruits, you might look into a problem called fructose malabsorption. Wheat tends to cause problems in people with fructose malabsorption because it contains fructans.

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OHtummytroubles Rookie
OHtummytroubles
Posted
  • Author

That sounds familiar. :( Doctors told me I had a "nervous stomach".

For me gluten-free did the trick. Some celiacs are also pretty sensitive to milk, either lactose or casein. If you have trouble with fruits, you might look into a problem called fructose malabsorption. Wheat tends to cause problems in people with fructose malabsorption because it contains fructans.

Thank-you Skylark - I will look into that.

I think I am going to request a new ttg IgA test because I am so gluten light (some days I only have grilled chicken and a baked potato - or rice). I rarely have bread/breaded items because I have such bloating and indigestion after I eat about anything. My plan is to:

1) Eat gluten heavy for a few weeks more and have a repeat ttg igA if Dr. will order it. My ttg IgA was elevated at 16...just didn't meat the standard of weak positive at a 20.

2) Possibly consult a dermatologist and biopsy the "bumps" I get often and currently have on my chin area and back of neck. I really never thought to look into them as DH because it wasn't an "all over" kind of rash. There are maybe 4 or 5 little blister-like bumps that will leak a clearish liguid if I itch them too much. They itch so bad that I end up breaking the blisters often and will have the leaking clear fluid for quite some time until they finally end up crusted a bit. Typically they last at least 3 weeks, but this time the chin/lower cheek by chin ones have lasted for over a month. They certainly leave red/purple scars...but I really never thought to look into DH because it wasn't like the pictures I see on Google where it will be on a patients arms, bottom, knees...etc. Mine come on chin area almost instantly after I eat pizza and will last weeks. I have a crazy itchy one on my neck/hairline right now, but again it is a small area - not "many". I just do not want to go looking for something that isn't there, but then again I do not want to miss something either.

ravenwoodglass Mentor
ravenwoodglass
Posted

Thank-you Skylark - I will look into that.

I think I am going to request a new ttg IgA test because I am so gluten light (some days I only have grilled chicken and a baked potato - or rice). I rarely have bread/breaded items because I have such bloating and indigestion after I eat about anything. My plan is to:

1) Eat gluten heavy for a few weeks more and have a repeat ttg igA if Dr. will order it. My ttg IgA was elevated at 16...just didn't meat the standard of weak positive at a 20.

2) Possibly consult a dermatologist and biopsy the "bumps" I get often and currently have on my chin area and back of neck. I really never thought to look into them as DH because it wasn't an "all over" kind of rash. There are maybe 4 or 5 little blister-like bumps that will leak a clearish liguid if I itch them too much. They itch so bad that I end up breaking the blisters often and will have the leaking clear fluid for quite some time until they finally end up crusted a bit. Typically they last at least 3 weeks, but this time the chin/lower cheek by chin ones have lasted for over a month. They certainly leave red/purple scars...but I really never thought to look into DH because it wasn't like the pictures I see on Google where it will be on a patients arms, bottom, knees...etc. Mine come on chin area almost instantly after I eat pizza and will last weeks. I have a crazy itchy one on my neck/hairline right now, but again it is a small area - not "many". I just do not want to go looking for something that isn't there, but then again I do not want to miss something either.

Those itchy bumbs do sound like DH. Do make sure the doctor is familiar with DH and know to biopsy the area next to the lesions not the lesions themselves. Tell the doctor that you are being evaluated for celiac so he doesn't automatically give you the atopic dermatitis diagnosis without even biopsying. Atopic dermatitis is the skin equivalent of IBS, IMHO. It falls under the you are reacting to something but I don't know what catagory.

OHtummytroubles Rookie
OHtummytroubles
Posted
  • Author

I will check out the breakouts with a DH Ravenwood - thanks! They are always fluid filled, and never anything but clear fluid. I have never had a "pus" filled breakout which I thought would be indicative of acne. The fact that they last so long, and are extremely itchy is what had me wondering if it was DH. Maybe this will be my key to diagnosis (if I can find a good dermatologist in my area). My mom sees a gentleman for her Rosacea, and he works with my niece as well for her acne problem - so maybe the family derm can assist:)

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