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Negative Blood Test - Gastro Says Lactose Intolerance?! Advice?


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#1 emcoats

 
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Posted 23 November 2012 - 08:14 PM

I have been having GI issues for about a year and half and I was first diagnosed with gastritis. The pain is getting worse as the days go on. I have never heard of celiac disease until my Grandma mentioned it after I had a few bites of macaroni salad and I was hunched over in pain and became extremely bloated. I have all the symptoms of celiac disease; I bloat within 30 minutes after I eat and I seriously look 6 months pregnant, and I am 110 pound girl with chronic constipation, fatigue after eating, abdominal cramping and sometimes feels like I'm being hit in the stomach with a baseball bat, small, drop like circular rash on my legs, arms, buttocks, elbows, and even my breasts that busts open in the center. I noticed I break out in this rash the more food I eat, but I can not tell what exactly stirs up this rash. I could eat a handful of goldfish and I have these symptoms, so I finally got fed up with dealing with the pain after eating, so I went to see my GP. My GP decided to do a full CBC and decided to test me for celiac disease. My GP asked for the IgA anti-endomysial antibodies test along with the IgA tissue transglutaminase test. The results came back, NEGATIVE and my CBC was normal. I was disappointed I did not have a diagnosis, but I knew I was going to have to see a gastroenterologist for further testing.

I went and saw the gastroenterologist and he tells me i'm lactose intolerant. I do not have diarrhea what do you mean i'm lactose intolerant? He is telling me all the possibilities, but I wanted further testing because I could not believe what I was hearing. I just had an ultrasound done on my pancreas, liver, right kidney, and gallbladder to rule out any conditions or diseases and had a CT scan done on my abdominal cavity. Those results came back all NEGATIVE. My gastro did mention that my CT scan showed I was "mildly constipated" and had a lazy bowel. I could not believe the mildly constipated because I had not gone #2 in NINE days!!!! I made an appointment to see my dermatologist regarding my rash, but I can not get into see him until January, so more waiting to get a diagnosis on that...

I am going for a EGD on the 29th because I still do not feel well after eat. There is something going on and I do not know where to go from there if those tests are negative as well. I feel deep down there is something wrong and I do not want to give up until I have an answer. Does anyone have any advice on what I should do from here? Could the possibility still be celiac disease even though the blood results came back negative or is it really lactose intolerance?

Thank you for reading my post; sorry so long. :) I'm confused and tired of self-diagnosing.
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#2 shadowicewolf

 
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Posted 23 November 2012 - 08:27 PM

Just some food for thought, intolerences work both ways with "C" and "D".

Have you had the genetic test?

Also, see if you can get a HIDA scan done on your gallbladder (ultrasounds are useless, imo, if there aren't stones).

Before you go in to see the dermatologist, make sure you have an active sore going, that way they can see what you mean. Also consider taking picture of your breakouts.
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#3 GottaSki

 
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Posted 23 November 2012 - 08:28 PM

Welcome!

You are not alone - many of us have gone through years of test after test being normal. This often means that doctors haven't ordered the correct tests.

Had you removed gluten partially or completely before the tTG-IgA and EMA-IgA? You'll need to be consuming gluten for the best possible opportunity for antibodies to be detected on blood work.

With your symptoms you need a full celiac panel -- Total IgA (the tTG and EMA are meaningless without it) along with tTG-IgG and DGP (Deamidated Gliadin Peptide) - both IgA and IgG.

Were you tested for any nutrient deficiencies? You mentioned CBC - you also need CMP along with all Bs, D, K, Iron, Ferritin, Copper and Zinc - others suggest the addition of A and Magnisium.

After ALL the proper tests are complete, I would strongly suggest you remove ALL gluten for a period of three months (six is better) as elimination is often the best test for Celiac Disease and is the only test for Non-Celiac Gluten Intolerance (NCGI).

Hang in there - don't let the docs tell you the "normal" tests mean there is nothing wrong.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#4 emcoats

 
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Posted 23 November 2012 - 08:48 PM

Just some food for thought, intolerences work both ways with "C" and "D".

Have you had the genetic test?

Also, see if you can get a HIDA scan done on your gallbladder (ultrasounds are useless, imo, if there aren't stones).

Before you go in to see the dermatologist, make sure you have an active sore going, that way they can see what you mean. Also consider taking picture of your breakouts.


No, I have not had the genetic test. My Dad was adopted, so I do not know if any one on his side of the family has celiac disease. Where do I go for the genetic testing? The ultrasound showed no stones, and the biliary tree showed no dilation. I just actually just received a letter from my gastro regarding my results, and he states and I quote, "These results are reassuring with regard to things such as Crohn's Disease, occult gallbladder, liver or pancreatic disease and even celiac disease, which would typically show some signs of bowl dilatation or increased fluid within the intestine". I have taken many pictures of the stages of these breakouts. It seems they itch really bad when they start to form, and as they start to bust open, it burns and turns really red. Looks almost like a blister. Thank you for the advice. :)
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#5 emcoats

 
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Posted 23 November 2012 - 09:02 PM

Welcome!

You are not alone - many of us have gone through years of test after test being normal. This often means that doctors haven't ordered the correct tests.

Had you removed gluten partially or completely before the tTG-IgA and EMA-IgA? You'll need to be consuming gluten for the best possible opportunity for antibodies to be detected on blood work.

With your symptoms you need a full celiac panel -- Total IgA (the tTG and EMA are meaningless without it) along with tTG-IgG and DGP (Deamidated Gliadin Peptide) - both IgA and IgG.

Were you tested for any nutrient deficiencies? You mentioned CBC - you also need CMP along with all Bs, D, K, Iron, Ferritin, Copper and Zinc - others suggest the addition of A and Magnisium.

After ALL the proper tests are complete, I would strongly suggest you remove ALL gluten for a period of three months (six is better) as elimination is often the best test for Celiac Disease and is the only test for Non-Celiac Gluten Intolerance (NCGI).

Hang in there - don't let the docs tell you the "normal" tests mean there is nothing wrong.


No, I did not remove any gluten from my diet before my blood test. I read that if you did, the tests would come out with a false negative result. I actually have my CBC results here, and it looks like I was only tested for the IgA (endomysial antibody) which was negative and the Ttg IgA (T-Transglutaminase) and that was <2 with a reference range of 0-3. Yes I did have a full Complete Metabolic Panel as well, and everything was in the normal range. It looks like I did not have the full celiac disease panel done and will ask the gastro when I go in for the EGD procedure on the 29th. If i still can not get any answers, I will go gluten free and see how I feel. I am going to try and upload a picture of my rash with this post, but I can't figure it out.. LOL
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#6 shadowicewolf

 
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Posted 23 November 2012 - 09:26 PM

No, I have not had the genetic test. My Dad was adopted, so I do not know if any one on his side of the family has celiac disease. Where do I go for the genetic testing? The ultrasound showed no stones, and the biliary tree showed no dilation. I just actually just received a letter from my gastro regarding my results, and he states and I quote, "These results are reassuring with regard to things such as Crohn's Disease, occult gallbladder, liver or pancreatic disease and even celiac disease, which would typically show some signs of bowl dilatation or increased fluid within the intestine". I have taken many pictures of the stages of these breakouts. It seems they itch really bad when they start to form, and as they start to bust open, it burns and turns really red. Looks almost like a blister. Thank you for the advice. :)


My gallbladder, before it "died", showed no signs via blood test and ultrasounds ("looks normal"). HIDA scan found that it was only working at 5%. When they took it out, it appeared to be dead. Further tests on it showed one blocked duct (no explination given), however that was not what got it. One half was working against the other, thus nothing got done with it.

The genetic test would show if you are a carrier of the genes that celiac has been connected to. It may also be somewhat useful for your father should he ever have issues (because hypothetically if you had the genes, its possible that he could have one or more as well). Mine was the standard blood test done my my GI doc. He had it sent off to a special lab.
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#7 ButterflyChaser

 
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Posted 24 November 2012 - 06:54 PM

I don't have a lot of advice to offer, but you have my sympathy: I have exactly the same symptoms, and I, too, am tired of getting a 6-months belly after eating. I used to get a rash like yours, but I at least in my case it disappeared after a week of the gluten-free diet.

Have you ever had problems with dairy? They once mis-diagnosed me with lactose intolerance because I had awful D and blisters after eating cheese, especially semi hard cheese like cheddar or gouda, and after eating ice cream, even if I kept saying that I had my skim milk and yogurt every day without any problem. Turned out it was some additive/thickener that killed me, not dairy per se. Have you asked your Doc what led him/her to say "lactose intolerance"?
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Hashimoto's thyroiditis and Grave's disease (2011). It must have been a Black Friday.
Intestinal dysbiosis. Suspected damage to my vili (2012). NCGS according to my dermatologist upon seeing my post-wheat rash.

Gluten-free. Sept 2012.
Canola, almonds, soy = evil.

Grain-free, legume-free. December 2012.
No peanuts and tree nuts. February 2013.
Erb-Duchenne palsy from birth trauma.

My body is trying to kill me.


#8 GFinDC

 
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Posted 25 November 2012 - 11:24 AM

Lactose intolerance is common with celiac disease. Celiac diesease can and does cause lactose intoerlance in many people.

Dairy will not affect celiac testing, so you could go ahead and eliminate all dairy from your diet for awhile and see if there is an improvement.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#9 emcoats

 
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Posted 27 November 2012 - 05:52 PM

I don't have a lot of advice to offer, but you have my sympathy: I have exactly the same symptoms, and I, too, am tired of getting a 6-months belly after eating. I used to get a rash like yours, but I at least in my case it disappeared after a week of the gluten-free diet.

Have you ever had problems with dairy? They once mis-diagnosed me with lactose intolerance because I had awful D and blisters after eating cheese, especially semi hard cheese like cheddar or gouda, and after eating ice cream, even if I kept saying that I had my skim milk and yogurt every day without any problem. Turned out it was some additive/thickener that killed me, not dairy per se. Have you asked your Doc what led him/her to say "lactose intolerance"?


I have NEVER had problems with diary. There are certain foods I eat, within an hour or two I will have diarrhea, those foods are pizza, spaghetti, and lasagna. Well, I am certainly going to see the dermatologist regarding this rash, but I'm not going until January. My gastro said he thinks it's lactose intolerance because I have the symptoms.. am I'm like, no I don't!! I don't have diarrhea. I'm so confused.. I eat and I feel sick. I want answers and he can't give them to me, then I will go see some one else. I am supposed to be having an upper endoscopy done Thursday and he his going to take some biopsies, so I hope those show something..
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