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Hi everyone,

This is my first post so bear with me. I have been lurking and reading many helpful posts but was hoping to share my current situation and ask for advice.

Around 2 months ago I got what I thought was the flu. I had a fever, aches, diarrhoea and an odd fast heart rate with a bounding pulse. I also developed high blood pressure for the first time in my life and it was usually around 150/100 when high. Most of the symptoms cleared up in a couple days but the diarrhoea and heart complications remained. I have seen a cardiologist and they ran me through tests like ECG and 24 hrs halter. The diagnosis was that my heart was structurally normal and he thought my heart was reacting to the virus as I recovered. 

In the first month I lost about 10-15lbs and became pretty weak. My stomach would normally feel fine through the day but would cause a lot of bloating pain overnight. I eventually saw a GI doc and he ran a series of blood tests for me. My thyroid, liver and full blood counts were good but the celiac screen showed a positive value. Below were my results.

anti-gliadin peptides iga 13, normal range 0-25

anti-gliadin peptides igg under 2, normal range 0-25

TTG IGA 3, normal range 0-20

TTG IGG 31, normal range 0-10

So it would appear my TTG IGG was the only positive which seems a bit unusual. The GI doc would like to do the biopsy but I have concerns about getting put to sleep when my heart is abnormal. I am hoping I can consider the elevated TTG IGG as a diagnosis and forego the biopsy if possible. I have 2 young kids and am 32 right now so I am hoping to look at Long term recovery. 

In terms of background I had GBS when I was 18 so I have a history with autoimmune. My Sister has autoimmune arthritis and my Mother has autoimmune psoriasis. My grandpas sister and my cousin have celiac disease.

I started taking some vitamin supplements and feel better but the worst symptoms remaining are the heart complications, achey joints and poorly digested food.

Thanks for your time.

 

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Hi Ryaculese,

Welcome to the forum! :)

I am curious if the doctors tested your thyroid.  The fast pulse and sudden high blood pressure could be thyroid related.  The thyroid could even cause digestive symptoms.  There is an autoimmune condition called Hashimoto's Thyroiditis that celiacs sometimes get.  It is an AI attack on the thyroid and can cause both hyperthyroid and hypothyroid symptoms.  This link talks mostly about hypothyroid symptoms, but hyperthyroid symptoms are possible too before the thyroid is destroyed.

http://www.mayoclinic.org/diseases-conditions/hashimotos-disease/home/ovc-20269762

  • A hormone test. Blood tests can determine the amount of hormones produced by your thyroid and pituitary glands. If your thyroid is underactive, the level of thyroid hormone is low. At the same time, the level of TSH is elevated because your pituitary gland tries to stimulate your thyroid gland to produce more thyroid hormone.
  • An antibody test. Because Hashimoto's disease is an autoimmune disorder, the cause involves production of abnormal antibodies. A blood test may confirm the presence of antibodies against thyroid peroxidase (TPO antibodies), an enzyme normally found in the thyroid gland that plays an important role in the production of thyroid hormones.

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Hi GFinDC,

Thanks for your post. I have heard of Hashimotos disease as my Cousin has it. She dealt with weight gain and I never realized it could cause weight loss. 

I have had two blood tests for thyroid. One was a more detailed test and the other had only the TSH levels. Both tests came back in the normal ranges. The cardiologist also took a look at my thyroid with Ultrasound as well as he said in his experience he has seen normal blood work but damaged thyroid on Ultrasound. That came back normal as well. I still question the thyroid a bit as I have pain in the front of my neck on one side. Usually it feels throbby.

Is the TGG IGG not very specific for Celiac? I wish I could find some stats on the likelihood of the various disease if you have an elevated TGG IGG.

Thanks.

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Hi Ryaculese,

No, according to the Mayo site it is a diagnostic test specifically for celiac disease.  So you may be bonafide celiac disease patient now. :)

*************************************************************************

http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/83660

Reference Values help-16.gif

<6.0 U/mL (negative)

6.0-9.0 U/mL (weak positive)

>9.0 U/mL (positive)

Reference values apply to all ages.

Interpretation help-16.gif

The finding of tissue transglutaminase (tTG) IgG antibodies may indicate a diagnosis of celiac disease, particularly in individuals who are IgA deficient. For individuals with moderately to strongly positive results, a diagnosis of celiac disease is possible and the patient should undergo a biopsy to confirm the diagnosis.

 

If patients strictly adhere to a gluten-free diet, the unit value of tTG-IgG antibodies should begin to decrease within 6 to 12 months of onset of dietary therapy.

 

See Celiac Disease Diagnostic Testing Algorithm in Special Instructions for the recommended approach to a patient suspected of celiac disease.

 

An algorithm is available for monitoring the patient's response to treatment, see Celiac Disease Routine Treatment Monitoring Algorithm in Special Instructions.

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Thanks for the clarity. Is there anyone else out there that had a normal TTG IGA but a high TTG IGG? Through searching the forum I have found a couple cases but if there are any others it would be comforting to know. 

I am scheduled to have a cardiac stress test later today to determine if it would be safe to be put to sleep for the biopsy. I am leaning towards having the biopsy now to possibly confirm my diagnosis and to have a base level in terms of potential damage in my intestine as my symptoms would suggest there may be damage present.

 

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Hi Emma6,

Thanks for your suggestions.

I thought the total IGA was either the same as the TTG IGA or the anti-gliadin IGA both of which were in the normal ranges. Is there another IGA that could be tested? From what I have heard the gene test could not diagnose celiac but could exclude it. Is that right? Is it perfectly accurate in the sense that if I do not have the gene it must be something else?

My cardiac stress test was good and they consider me Low risk for the biopsy. Are heart complications relatively normal with celiac? I would consider them one of my worst symptoms. 

Thanks.

 

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13 hours ago, Ryaculese said:

Hi Emma6,

Thanks for your suggestions.

I thought the total IGA was either the same as the TTG IGA or the anti-gliadin IGA both of which were in the normal ranges. Is there another IGA that could be tested? From what I have heard the gene test could not diagnose celiac but could exclude it. Is that right? Is it perfectly accurate in the sense that if I do not have the gene it must be something else?

My cardiac stress test was good and they consider me Low risk for the biopsy. Are heart complications relatively normal with celiac? I would consider them one of my worst symptoms. 

Thanks.

 

No, total IgA should always be done with any other IgA based testing to see if you make enough of the antibody for the testing to be valid.  There are people who are IgA deficient, which would make any IgA testing unreliable. They then go to IgG based testing.

Yes, heart problems are connected to Celiac.  A-fib or other heart rhythm issues can be directly caused by Celiac Disease.  There have been quite a few people I have met whose heart issues went away after being gluten-free for a while.  Doctors have a tendency to blame everything on a virus. Even the best cardiologists can be clueless about the effects of gluten on the heart.  I have read the cause can be from the heart producing anti-tTg antibodies, like the intestinal tract does when a Celiac eats gluten.  With your family history of Celiac and your symptoms, it looks like you have just joined our little club!  ;)  Good luck with biopsy but keep in mind that if they come back with a negative, it does not rule Celiac out.  Damage can be patchy and it can be missed.  Make sure they do at least 6 samples from different parts of your innards!

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Hi Ryaculese,

I have been having some severe GI problems for a few months now and I just had bloodwork done. I also only tested high on the TTG Igg and negatives on all the rest. I am still waiting for ultrasound results and to hear back from the Dr. to see what he says. I read that being tested positive for TTG IgG you could have a different or another autoimmune disease? When I started feeling sick I thought I had Crohn's Disease and I still have a feeeling I have it. I tend to get sick from foods high in fiber like beans and dairy the most. Besides the celiac symptoms I also have severe joint, back and colon pain. I will keep you updated on what my Dr. says!

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Hi Gemini,

Thanks for clearing up what the IGA test is for. I may need to go get that test completed in the future. Also good to know heart complications could be related to celiac. It would be rough if there were more than one disease at work here.

Hi PugMom,

Thanks for sharing your test results. It is somewhat comforting to know there is another person out there with the same abnormal TTG IGG. 

I had the endoscopy and colonoscopy today. I met with the GI that did the procedure and he stated he couldn't see any visual damage in my digestive tract. He thinks he can pretty much rule out Crohn's disease and is waiting for the biopsy results to discuss Celiac further. He has asked me to go on a gluten free diet due to the blood test results and to see if I feel better. While it is comforting to know there is not severe damage in there it is unexpected as I have lost so much weight and have felt so poor. My sleep has been pretty poor lately so he gave me some mild Xanax which may help I guess. 

I hope this is the beginning of a recovery for me...

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On 2016-11-28 at 1:01 AM, Ryaculese said:

Is there anyone else out there that had a normal TTG IGA but a high TTG IGG?

Yes me. That's because I'm IgA deficient - have next to none. I had super high TTG-IgG.  Also  my endoscopy showed no villi damage but did show high IELs. My gi said positive blood test plus high IELs meant definitely celiac. He would have concluded celiac just from the blood work I think.  2 years later, strictly gluten-free the TTG-IgG slowly coming down. It's a no brainer diagnosis honestly. Sorry ? 

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11 minutes ago, Ryaculese said:

Hi Gemini,

Thanks for clearing up what the IGA test is for. I may need to go get that test completed in the future. Also good to know heart complications could be related to celiac. It would be rough if there were more than one disease at work here.

Hi PugMom,

Thanks for sharing your test results. It is somewhat comforting to know there is another person out there with the same abnormal TTG IGG. 

I had the endoscopy and colonoscopy today. I met with the GI that did the procedure and he stated he couldn't see any visual damage in my digestive tract. He thinks he can pretty much rule out Crohn's disease and is waiting for the biopsy results to discuss Celiac further. He has asked me to go on a gluten free diet due to the blood test results and to see if I feel better. While it is comforting to know there is not severe damage in there it is unexpected as I have lost so much weight and have felt so poor. My sleep has been pretty poor lately so he gave me some mild Xanax which may help I guess. 

I hope this is the beginning of a recovery for me...

FYI.  During my endoscopy, my GI could see no visible damage.  My biopsies revealed a Marsh Stage IIIB (moderate to severe damage).  So....it's not over until all testing is complete.  

You could go gluten free, but you might wait until you get final results (if you can stand it).  What if the pathologist loses your samples?  What if paperwork is misplaced?  This has happened.  

Make sure all drugs are gluten free.  

Finally, my niece was just diagnosed with Crohn's.  She did not present with typical symptoms.  We could have sworn she had celiac disease, but she did not.  A pill cam caught the severe damage at the end of her small intestine our of reach of both scopes (endo and colon).  

Personally, I have never had a positive on anything but the DGP IgA test (even on follow-up testing after a glutening).  Weird, but that's the reason there's a celiac panel.  There's not just one test that catches all celiacs.  

Take care! 

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Hi Nolev,

Thanks for sharing your diagnosis. I do think it is very likely to be celiac that I have. I am mostly hoping that it is the only issue I have.

Hi cycling lady,

You give some very valid advice. My doctor said that Crohn's in the small bowel was atypical and rare but it still can happen. I really hope things improve for me on a gluten free diet. Thanks for the tip about the meds as well. I read your post on the way to return the Xanax to the doctor as I think it has gluten in it. The Doctors response was "a little gluten should be ok". I am very frustrated with the medical care right now. I am from North America but I am currently on assignment in Singapore. So far all docs I have seen say it is typically a Caucasian disease and they don't know much about it. Singapore has a very high standard of living and very good medical care one general but I cannot seem to find a doctor that I can rely on for info about Celiac. I asked about vitamin deficiencies and the doctor said I should be fine because I eat a balanced diet. This is after losing 30 pounds in 2 months...

I have started a gluten free fodmap diet for now and have started taking iron and magnesium supplements to hopefully fix my heart up. If this gets much worse I guess I may need to go home for some more specific medical support.

 

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Hi Ryacluse,

Your doctor is wrongo.   A little gluten is not ok.  Any amount of gluten could stimulate the immune system to respond. UofChicago Celiac Center has an faq on celiac that is helpful.  Maybe your doctor could read it.

***********************************************

http://www.cureceliacdisease.org/faqs/

What common nutrient deficiencies might an adult experience prior to diagnosis?

Iron, calcium, and Vitamin D are the most common deficiencies, but some present with deficiencies in B12, copper, folate, magnesium, niacin, riboflavin, and/or zinc. Nutrient deficiencies associated with celiac disease are due to intestinal damage caused by protein in wheat, rye, and barley. In most cases, nutrient deficiencies that were caused by damage from celiac disease will naturally resolve as your intestine heals. Many gluten-free dieters choose foods that aren’t fortified with vitamins and minerals like their gluten-containing counterparts. Thus, we suggest a general multivitamin to prevent against nutritional deficiencies. August, 2015

***********************************************

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Just make sure those supplements are gluten-free!  My anemia resolved within a few months with added iron.  I generally do not take any supplements, but prefer to get all my vitamins and minerals through whole foods.  Lab tests show I am no longer deficient.  So supplementation might  be helpful in the beginning, but not always necessary once healing occurs. 

Anxiety and/or depression is common (based on member reports and research).  It is one of the first signs of a glutening for hubby and me (kid says we get crabby).  It typically resolves on a gluten free diet.  

Not all doctors know about celiac disease in North America either.  Your best bet is to be your own health advocate.. 

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Hi!! I found this post while google searching for TtG IgG positive results.  My TTG IGG was the only one that came back high, too (I got 2 blood tests a few months apart).  It might have been 17 if the normal range was <6, something like that.  After giving up gluten for 8 weeks, the antibodies rose by 2 points, only in that category!  Weird.  My doctor did the original blood panel after I described IBS symptoms (I was then diagnosed with IBS-C after a few months of testing).  I had 2 endoscopies, a year apart, which were both negative.  Both were done by different GI docs; the second one was performed by one who is listed on the celiac foundation website as 1 of 2 recommended doctors in my area (when there are dozens of GIs around here), so I was confident in him to find something if it were there.  This April, I was diagnosed with Hashimoto's.  If I were you I would absolutely get my thyroid antibodies checked!  My TSH, Free T3, and Free T4 were all in the normal range (but after tons of research, turns out the numbers were really suboptimal).  I've heard of this happening to others with Hashimoto's, but I've been searching and searching for a link between the two..... Like, why we would have autoimmune reactions to gluten, without the presence of actual celiac disease.

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Hi Ohokaycool,

Thanks for sharing your experience. My experience may not be that different. They were able to biopsy my small intestine from both ends of the small intestine. Both did not show difinitive signs of celiac. The doctor at this time said I may still be celiac so to follow a gluten free diet which I did. My symptoms became progressively worse and I had further tests completed. They showed abnormal thyroid antibodies and abnormal ANA antibodies which may indicate connective tissue disease (lupus is one form). 

At this point, I was placed on a very restrictive Keto diet to lower inflammation and improve healing. Things initially got worse again and I had some further blood tests. This round of tests showed that the thyroid antibodies were back in a normal range. But showed a very high CRP (measure of inflammation). I modified my Keto prescribed diet to also follow a diet called the Paleo Approach. I have since started to feel better. My heart symptoms are less severe and less frequent and my mental clarity has improved dramatically. I still do not feel normal but usually feel a bit better each day. 

I have another blood test scheduled in the end of January where they will recheck inflammation and the abnormal antibodies I have presented in the past. I have seen a Rheumy and they believe I am developing mixed connective tissue disease. This more or less makes sense to me as my symptoms were atypical for celiac disease. Regardless of the type of autoimmune disease I have, I will likely follow a modified diet for the rest of my life as I believe it is contributing to my recovery.

I have read 4 books on managing and coping with autoimmune disease and I highly recommend The Paleo Approach by Sarah Ballantyne as it seems the most logical and well explained. I modified a Keto diet to further restrict the foods in her book about 2 weeks ago and have felt much better. Unfortunately I am not in normal health and still have lingering symptoms but I am hopeful I will see continued improvement. The diet is difficult to follow but my resting HR has varied from 39 bpm to 140 bpm and I feel I would try just about anything to regain my health.

Has anyone else out there tried the Paleo Approach before? I was very skeptical but I will continue anything that appears to help. One symptom that has completely cleared is no more rumbly tummy ever for about a week now.

Thanks.

Ryan

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