3x postive TTG IGA TESTS NEGATIVE BIOPSY?!

[Baz1234]

Hi all, i just got a call and my biopsy was negative i dont know what to now really is it possible to have celiacs and a negative biopsy? I have had bowel problems everyday since the age of 13 i am 22 now i have extreme weaknes tiredness nerve pain and itchy like burning stinging skin pain i have joint pain scalp problems and gum problems

heres a little bit more information regarding my tests -

2013 (TTG) level 20 U/ml. Range -(0-0.6.9)

(TTG)   IgA : positive    

Serum endomysium antibodies

(WEAK POSITIVE) serology suggestive of celiacs disease.

( doctor said i had ibs and didnt tell anything about this positive test or refer me to a gasteronologist)

( 2017)

(TTG) level - 10      (0.0 - 6.9)

(TTG) igA Equivocal 

 

( 2017)  more than 5 months apart

(TTG) level - 11    (0.0 - 6.9)

(TTG)   IgA  positive 

serum endomysium negative

i also have LOW FOLATE LEVELS ( 2.7)

also have Low (vitamin D) 

  

I have alot of celiacs symtoms mainly the the bowel problems joint pains fatigue tiredness never could put on weight always feel like i need to go toilet itchy burning skin pins and needles more like electric shock.

 

could any relate any help would be appreciated thanks.

 

 

 

[Ennis-TX]

1 hour ago, Baz1234 said:

Hi all, i just got a call and my biopsy was negative i dont know what to now really is it possible to have celiacs and a negative biopsy? I have had bowel problems everyday since the age of 13 i am 22 now i have extreme weaknes tiredness nerve pain and itchy like burning stinging skin pain i have joint pain scalp problems and gum problems

heres a little bit more information regarding my tests -

2013 (TTG) level 20 U/ml. Range -(0-0.6.9)

(TTG)   IgA : positive    

Serum endomysium antibodies

(WEAK POSITIVE) serology suggestive of celiacs disease.

( doctor said i had ibs and didnt tell anything about this positive test or refer me to a gasteronologist)

( 2017)

(TTG) level - 10      (0.0 - 6.9)

(TTG) igA Equivocal 

 

( 2017)  more than 5 months apart

(TTG) level - 11    (0.0 - 6.9)

(TTG)   IgA  positive 

serum endomysium negative

i also have LOW FOLATE LEVELS ( 2.7)

also have Low (vitamin D) 

  

I have alot of celiacs symtoms mainly the the bowel problems joint pains fatigue tiredness never could put on weight always feel like i need to go toilet itchy burning skin pins and needles more like electric shock.

 

could any relate any help would be appreciated thanks.

 

 

 

First consider the surface area of your small intestines if laid out is the size of a tennis court....and they are only taking a few samples from this. They might have missed it.

The pins and needles can be a sign of magnesium or b-vitamin deficiencies caused by damaged intestines not absorbing them. Supplementing can help and I can give you pointers on these and which ones if you would like.

I see 2 different kinds of blood test but there are some other antibody test they can run to rule out a false positive, as certain other auto immune disease can flare a false positive.

[Baz1234]

4 minutes ago, Ennis_TX said:

First consider the surface area of your small intestines if laid out is the size of a tennis court....and they are only taking a few samples from this. They might have missed it.

The pins and needles can be a sign of magnesium or b-vitamin deficiencies caused by damaged intestines not absorbing them. Supplementing can help and I can give you pointers on these and which ones if you would like.

I see 2 different kinds of blood test but there are some other antibody test they can run to rule out a false positive, as certain other auto immune disease can flare a false positive.

WHat else could cause these positives also isn't an ema positive highly likely that its celiacs? Thanks.

[RMJ]

You could try going gluten free for 6 months and see if the TTG levels go down.

 

[squirmingitch]

Yes, a positive EMA is highly indicative of celiac. I did not see that they did an EMA on you though.?????

[Baz1234]

21 minutes ago, squirmingitch said:

Yes, a positive EMA is highly indicative of celiac. I did not see that they did an EMA on you though.?????

Sorry i thought endomysium was the same thing i got mixed up so what does that indicate?

[squirmingitch]

Actually I missed that b/c it was spelled out rather than being initials. I think that's the same thing but I'm confused about the way it's written in 2013 --- there is no value unless you're saying the next line is referring to that. Even so, then the 2017 test says clearly states negative there. 

[Baz1234]

35 minutes ago, squirmingitch said:

Actually I missed that b/c it was spelled out rather than being initials. I think that's the same thing but I'm confused about the way it's written in 2013 --- there is no value unless you're saying the next line is referring to that. Even so, then the 2017 test says clearly states negative there. 

Yes that's referring to EMA it was a weak positive.  i also have high ALT if thats of any 

[squirmingitch]

But it makes no sense that EMA was positive in 2013 but not in 2017. Regardless, I would say go on a strict gluten-free diet for a good 6 months at least & see if things start clearing up.

[Baz1234]

2 minutes ago, squirmingitch said:

But it makes no sense that EMA was positive in 2013 but not in 2017. Regardless, I would say go on a strict gluten-free diet for a good 6 months at least & see if things start clearing up.

Hmmm yeah i agree thats the only option really left now. I have alot of symptoms related to celiacs and all these came on suddenly then over the years i slowly got more ill and ill also is TSH level 3.7 considered high does ELEVATED TTG strongly suggest celiacs or can their be something else? Thanks.

[squirmingitch]

I am not versed in the TSH area but there are some here who are. There are other things that can elevate the TTG.

[Posterboy]

 

1 hour ago, Baz1234 said:

Yes that's referring to EMA it was a weak positive.  i also have high ALT if thats of any 

 

1 hour ago, squirmingitch said:

But it makes no sense that EMA was positive in 2013 but not in 2017. Regardless, I would say go on a strict gluten-free diet for a good 6 months at least & see if things start clearing up. 

Baz1234, In response to these two questions see link on elevated ALT levels in undiagnosed celiacs and old thread about this topic

Elevated ALT levels can be indicative of undiagnosed Celiac disease.

Here is a very well article about this topic.

Open Original Shared Link

as to your other conundrum of "first it was celiac but now it is not" issue see this thread that talks about this same issue for another forum user.

It should answer some of your questions.

I hope this is helpful but it is not medical advice.

As always, “Consider what I say; and the Lord give thee understanding in all things” 2 Timothy 2: 7  

Posterboy by the Grace of God,

[BlueAbyss]

Your TSH levels are in the "normal" range, which is anything between 0.4-5. Everyone's "normal" for TSH varies but it seems your thyroid is functioning as it should. I was diagnosed with Hashimoto's Hypothyroid for about 4 years now and your symptoms do mirror some of the classic thyroid symptoms but not in a way that I would definitely say it's your thyroid. Going completely gluten free sounds like your best bet, give it some time to let your insides adjust and re-evaluate. Trial and error sucks, especially when it concerns your health.

[Baz1234]

Thanks guys for all the help and advice im going to try go gluten free from tomorrow but for its going to be really hard as i grew uo around that food flat breads (Atta) on a dailys basis wheat flour and currys asian food lol can anyone recommend me a cook book jist plain simple meals (meats) and all sorts thanks.

[Ennis-TX]

2 minutes ago, Baz1234 said:

Thanks guys for all the help and advice im going to try go gluten free from tomorrow but for its going to be really hard as i grew uo around that food flat breads (Atta) on a dailys basis wheat flour and currys asian food lol can anyone recommend me a cook book jist plain simple meals (meats) and all sorts thanks.

I make a simple flat bread out of eggs and coconut flour in a skillet think the recipe is on my profile in one of my recipe blogs. Califlour foods makes a plant based pizza crust that can be used as a flat bread or baked into crisp.

Thai Kitchen Makes curry paste that is gluten free....make your curries from scratch it with, I used to make a great one with with coconut milk and butter nut squash (you can use pumpkin to). You can add plain stewed beef boil then stew for a few hours til it makes a broth base, to these add chopped carrots, boiled til soft then blended butter nut poured in to thicken, with 1-2tbsp of the curry paste and some chopped and sauteed veggies of choice (deglaze the pan and add the liquid and sauteed veggies to the soup for great flavor)

[Baz1234]

2 minutes ago, Ennis_TX said:

I make a simple flat bread out of eggs and coconut flour in a skillet think the recipe is on my profile in one of my recipe blogs. Califlour foods makes a plant based pizza crust that can be used as a flat bread or baked into crisp.

Thai Kitchen Makes curry paste that is gluten free....make your curries from scratch it with, I used to make a great one with with coconut milk and butter nut squash (you can use pumpkin to). You can add plain stewed beef boil then stew for a few hours til it makes a broth base, to these add chopped carrots, boiled til soft then blended butter nut poured in to thicken, with 1-2tbsp of the curry paste and some chopped and sauteed veggies of choice (deglaze the pan and add the liquid and sauteed veggies to the soup for great flavor)

Speaking of milk i just remembered it's been years since i drank it because it gives me really bad stomach pain and cramps could that be a link aswell? 

[cyclinglady]

Good for you for trialing  the Gluten Free diet and follow up with testing.  

Consider asking for a complete thyroid panel, including thyroid antibodies.  Your TSH is is just our of range, but some  doctors would argue that.  I do best with a TSH closer to 1.  I have Hashimoto’s which is an autoimmune thyroid problem just like celiac disease is autoimmune.   You can have a normal TSH but still have elevated thyroid antibodies.  Like Ennis suggested, your doctor should be checking antibodies for other organs to rule out Crohn’s, Ulcerative Colitis or Lupus.  Those could possibly elevate the TTG.  

How is your ferritin level?  Hemoglobin?  Anemia is a common way to present with celiac disease.  My doctors blamed my anemia for my entire life on being a girl (that and a genetic anemia).  

I will share my niece’s story.  Celiac disease was ruled by four Gastroenterologists (since I have celiac disease she was tested).  She was scoped from both ends, CT scans, nothing.  Finally, the fourth GI ordered a pill camera.  She was diagnosed with Crohn’s. The damage was severe but it was beyond the reach of the scope).  She also did not display any typical Crohn’s symptoms which really threw doctors off. 

Not saying you have Crohn’s, but I am saying you need to keep advocating for your health.  I hope the diet works out for you.  If it is celiac disease, treatment is much easier than other Autoimmune issues.  

I wish you well. 

[Baz1234]

4 minutes ago, cyclinglady said:

Good for you for trialing  the Gluten Free diet and follow up with testing.  

Consider asking for a complete thyroid panel, including thyroid antibodies.  Your TSH is is just our of range, but some  doctors would argue that.  I do best with a TSH closer to 1.  I have Hashimoto’s which is an autoimmune thyroid problem just like celiac disease is autoimmune.   You can have a normal TSH but still have elevated thyroid antibodies.  Like Ennis suggested, your doctor should be checking antibodies for other organs to rule out Crohn’s, Ulcerative Colitis or Lupus.  Those could possibly elevate the TTG.  

How is your ferritin level?  Hemoglobin?  Anemia is a common way to present with celiac disease.  My doctors blamed my anemia for my entire life on being a girl (that and a genetic anemia).  

I will share my niece’s story.  Celiac disease was ruled by four Gastroenterologists (since I have celiac disease she was tested).  She was scoped from both ends, CT scans, nothing.  Finally, the fourth GI ordered a pill camera.  She was diagnosed with Crohn’s. The damage was severe but it was beyond the reach of the scope).  She also did not display any typical Crohn’s symptoms which really threw doctors off. 

Not saying you have Crohn’s, but I am saying you need to keep advocating for your health.  I hope the diet works out for you.  If it is celiac disease, treatment is much easier than other Autoimmune issues.  

I wish you well. 

I should of stated thus before but my mom says as i child i has some problems with anemia and i was prescribed a syrup.

also my ferritin levels are - 81.68ug/L range - (30 - 400)

also ive just seen on my blood count my fomate level is below range 2.7

and my (RBC) is high 6.02 range (4.50-5.50)

also my mcv is low (78.9) range (83.0- 101)

does that indicate anemia?

[Ennis-TX]

18 minutes ago, Baz1234 said:

Speaking of milk i just remembered it's been years since i drank it because it gives me really bad stomach pain and cramps could that be a link aswell? 

Yeah big one, the enzymes to break down lactose in milk come from the villi....the ones celiac destroys. Years later I still can not have anything with dairy. Other claim they can have it after awhile of healing.

Personally I had a issue with for over a decade....and brain washed myself into that it was evil pus filled stuff for baby cows not humans. I have been using almond milks, cashew milks, coconut milks, and dairy free cheeses...had some bumps but found a few I like....I have to avoid corn due to a allergy and stick to the purest alternatives now days, like Miyoko Mozzarella, Their Cream cheese is good to, and Leaf Cuisine smoke gouda and pepper jack spreads are great the garlic and herb and cream cheese is fine, Kite Hill Ricotta is a god send, and their truffle and dill cheese is on another level. Tree line makes a good scallion spread and garlic and herb spread...but their wheels of cheese suck.