Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Celiac.com!
    eNewsletter
    Donate

Years Of Searching


Soconfused27

Recommended Posts

Soconfused27 Rookie

Please bare with me, this is going to be a long post. I am here in search of opinions. I have been unwell for at least 6 years, maybe most of life but most noticeable the last 6 years. Over these years I have had an increase in symptoms and after numerous doctors visits I was told its all anxiety.

My symptoms include weight loss, hair loss (head and eyebrows), memory loss, cognitive disfunction, anxiety, I get this feeling of having a cloudy head, can't think, going to pass out feelings sometimes after eating sometimes not, joint pain and stiff joints, swollen fingers and puffy face in the morning, dark circles under my eyes, bloodshot eyes, tiered, headaches, swollen glands in my throat, severely inflammed gums and sore mouth. My sympoms seem to come and go but I never really feel 100%.

At my wits end last week in serious pain again I went to the doctor with a list of tests. I actually found a caring doctor who decided to take me on. One of the tests was anti-transglutaminase IgA. I have never heard of this one before and since it was high I decided to google it which led me here.

It says on the form 8.6 with a range of <7.0 so its a weak positive. Other then that I have a positive ANA but that's it everything else looks good. I see the doctor on Friday and assume more tests will be ordered.

My question is does such a weak positive mean anything? Can IgA be indicative of anything else? Can celiac cause all these symptoms that come and go?

Thanks in advance

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



1desperateladysaved Proficient

Your list sounds like lists I have read on here.  Sorry you have been suffering.  I hope you are really going to be able to solve this now.  I don't know much about the specific tests, but trust someone will be able to help.  keep us posted on further tests.

 

D

Link to comment
Share on other sites
nvsmom Community Regular

A weak positive tTG IgA usually means celiac but your symptoms of thinning hair, memory and cognitive problems, anxiety, swollen glands, puffy face and eyes, and headaches are also symptoms of hypothyroidism....outer edges of eyebrows thinning out is CLASSIC hypothyroid symptom. You might want to ask your GP about thyroid testing. Good thyroid tests are:

  • TSH - should be near a 1
  • Free T4 and Free T3 - should both be in the upper 50-75% range of your lab's normal reference range
  • TPO Ab - should be very low

A weak tTG IgA can also indicate Crohn's, chronic liver disease, a severe GI infection, and diabetes. But as I said, it usually indicates celiac disease. It is a fairly specific test.

 

Your symptoms are also celiac symptoms so you might want to do further testing. The celiac panel is:

  • tTG IgA and tTG IgG (positive tests indicate intestinal villi damage)
  • EMA IgA (this picks up more advanced damage to the villi and is similar to the tTG tests)
  • DGP IgA and DGP IgG (a newer and really good test)
  • total serum IgA (a control test to make sure you don't get false negative in the other tests)
  • AGA IgA and AGA IgG (older less reliable tests that show gluten sensitivity rather than intestinal damage)

There is also the endoscopic biopsy for further testing.

 

The tests are discussed in the following report on pages 11-12: Open Original Shared Link

 

Make sure you continue to eat gluten prior to testing or it could negatively affect your results.

 

Good luck. I hope you are able to find some firm answers.

Link to comment
Share on other sites
Soconfused27 Rookie

Thank you for your reply! If I have finally found an answer then I will be extatic. Even if it wil be very difficult, I will finally have an answer and be able to get better. My memory has gotten so bad lately!

I have my thyroid function tested numerous times, and while my numbers aren't ideal they are still within range. Also all my antibody tests are neg (tpo, tgab and TSI) so even if mild hypothyroidism were at play it would be secondary I would think. My eyebrows are falling out all over, the outer edge and the inner edge.

I also should add that my CBC, liver function and kidney function were normal. I also had a normal CRP and sed rate. They also tested for anti ds DNA and ENA which were neg.

Since I have a long list of symptoms, I don't have a clue what's going on. This is the first test that's shown anything to date. I also get chest pain, but that is suspected to be muscle. I bruise really easy, and have bad scarring acne that came from nowhere. Whatever this is, it's in my family, undiagnosed.

The only gut issues I've had are chronic constipation but I never thought anything of it since its been that way since I can remember (my daughter was born like this too). No matter what I eat it doesn't really help. There was a few times where I remember lying awake at night with this strange gut pain where it hurt so bad I didn't want to move, but that was only a few times so I thought nothing of it. I also get this gassy feeling in occasion but no gas comes. Other then that my gut seems pretty inactive (literally).

Honestly through out this search, celiac never crosse s my mind . I didn't think it could affect my head! Thanks for the reply... Hoping for answers on Friday.

Link to comment
Share on other sites
nvsmom Community Regular

Thank you for your reply! If I have finally found an answer then I will be extatic. Even if it wil be very difficult, I will finally have an answer and be able to get better. My memory has gotten so bad lately!

I have my thyroid function tested numerous times, and while my numbers aren't ideal they are still within range. Also all my antibody tests are neg (tpo, tgab and TSI) so even if mild hypothyroidism were at play it would be secondary I would think. My eyebrows are falling out all over, the outer edge and the inner edge.

I also should add that my CBC, liver function and kidney function were normal. I also had a normal CRP and sed rate. They also tested for anti ds DNA and ENA which were neg.

Since I have a long list of symptoms, I don't have a clue what's going on. This is the first test that's shown anything to date. I also get chest pain, but that is suspected to be muscle. I bruise really easy, and have bad scarring acne that came from nowhere. Whatever this is, it's in my family, undiagnosed.

The only gut issues I've had are chronic constipation but I never thought anything of it since its been that way since I can remember (my daughter was born like this too). No matter what I eat it doesn't really help. There was a few times where I remember lying awake at night with this strange gut pain where it hurt so bad I didn't want to move, but that was only a few times so I thought nothing of it. I also get this gassy feeling in occasion but no gas comes. Other then that my gut seems pretty inactive (literally).

Honestly through out this search, celiac never crosse s my mind . I didn't think it could affect my head! Thanks for the reply... Hoping for answers on Friday.

 

I too had a thyroid that measured "normal" but not quite ideal (a TSH of 2.5-6.5) for 15 years. Finally, a year ago, my TSH went into the teens and they believed me. I can honestly say that a TSH of 3 felt NO different than a TSH of 14 for me. My TSH put me at sub-clinical but my Free T3 and Free T4 were at the very bottom of the normal range. After one year of upping and tweaking my meds, I am now on a full replacement dose of thyroid hormones.... for my subclinical TSH scores!  :rolleyes:

 

And my TPO Ab was normal too, at the upper limit of normal, but still normal.

 

I would push to have all the thyroid tests done. The Free T's tell the actual amount of hormones available in the body where as TSH is a pituitary hormone that indicates how hard your pituitary thinks your thyroid should work.... not always accurate.

 

Constipation is another classic hypothyroid symptom and a celiac symptom too, although less widespread.

 

I too was tested for the rheumatic diseases... The Rheumatologist thinks celiac disease is the cause of my problems (I hope she's right because after 1 year gluten-free, I hope to turn a corner soon). My GP thinks I have a rheumatic problem (lupus?) and a new orthomolecular doctor I went to thinks most of my problems are due to unexplained hypothyroidism.... I just want to smack all their heads together, steal their prescription pads and handle it all myself!  LOL ;)

 

Good luck on Friday.

Link to comment
Share on other sites
pricklypear1971 Community Regular

Ensure you get copies of all labs, and that you get all of the celiac antibody tests and the free t3/4 thyroid tests.

I'd request a trial of thyroid meds, regardless of tests. You may be subclinical. Even if you have to go to a witch doctor, try thyroid meds.

Link to comment
Share on other sites
Soconfused27 Rookie

Thank you! Actually thyroid was my first route and with my numbers I'm not sure even my great new doctor would agree to a trial. My present numbers "while in a giant flare up of symptoms" are

Tsh- 2.37. (0.2-4.0)

Thyroxine free 10.3 (7.5-21.1)

Free t3 5.0 (3.5-6.5)

Tsh receptor antibody <0.30. (<1.75

Anti-thyroglobulin <20 (<40)

Anti tpo (in april) <10 (<50)

Anti dsdna 7 (<120)

ENA screen negative

Everything else is normal as well

I have normal ferritin, and vit b12. It could be better but def still in that normal range. Magnesium is good, calcium is good.

I have finally found a doctor who is thorough and willing to listen so I'm hoping this is a means to an end.

I also have sun sensitivity, and strange skim issues. The worst by far is the head is the head issues though. Thanks again for the help

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



frieze Community Regular

Thank you! Actually thyroid was my first route and with my numbers I'm not sure even my great new doctor would agree to a trial. My present numbers "while in a giant flare up of symptoms" are

Tsh- 2.37. (0.2-4.0)

Thyroxine free 10.3 (7.5-21.1)

Free t3 5.0 (3.5-6.5)

Tsh receptor antibody <0.30. (<1.75

Anti-thyroglobulin <20 (<40)

Anti tpo (in april) <10 (<50)

Anti dsdna 7 (<120)

ENA screen negative

Everything else is normal as well

I have normal ferritin, and vit b12. It could be better but def still in that normal range. Magnesium is good, calcium is good.

I have finally found a doctor who is thorough and willing to listen so I'm hoping this is a means to an end.

I also have sun sensitivity, and strange skim issues. The worst by far is the head is the head issues though. Thanks again for the help

what is your B12 level, commonly the number used in the USA is much too low....it should be over 500.

Link to comment
Share on other sites
Soconfused27 Rookie

I am in canada, but my number comes in around 250 all the time with the range being >150 pmol/L.

My ferritin is always between 30-40 with a range of 15-200 ug/L. I eat alot of red meat and green vegetables.

Vitamin D hasn't been tested in 4 years but when it was it was 94.

Link to comment
Share on other sites
frieze Community Regular

much too low,  good luck

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - BluegrassCeliac replied to lasthope2024's topic in Food Intolerance & Leaky Gut
      7

      This forum might be the last hope I have in my life. Please I beg you

    2. - Scott Adams replied to Nacina's topic in Related Issues & Disorders
      1

      14 year old with Celiac & EOE still suffering...

    3. - Nacina posted a topic in Related Issues & Disorders
      1

      14 year old with Celiac & EOE still suffering...

    4. - trents replied to Fluka66's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Waiting for urgent referral.

    5. - Fluka66 replied to Fluka66's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Waiting for urgent referral.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,067
    • Most Online (within 30 mins)
      7,748

    myneckmybackmyceliac
    Newest Member
    myneckmybackmyceliac
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • BluegrassCeliac
      Hi,   Not saying Thiamine (B1) couldn't be an issue as well, but Mg was definitely the cause of my problems. It's the only thing that worked. I supplemented with B vitamins, but that didn't change anything, in fact they made me sick. Mg stopped all my muscle pain (HCTZ) within a few months and fixed all the intestinal problems HCTZ caused as well. Mom has an allergy to some sulfa drugs (IgG Celiac too), but I don't think I've ever taken them. Mg boosted my energy as well. It solved a lot of problems. I take 1000mg MgO a day with no problems. I boost absorption with Vitamin D. Some people can't take MgO,  like mom, she takes Mg Glycinate. It's one of those things that someone has try and find the right form for themselves. Everyone's different. Mg deficiency can cause anxiety and is a treatment for it. A pharmacist gave me a list of drugs years ago that cause Mg deficiency: PPIs, H2 bockers, HCTZ, some beta blockers (metoprolol which I've taken -- horrible side effects), some anti-anxiety meds too were on it. I posted because I saw he was an IgG celiac. He's the first one I've seen in 20 years, other than my family. We're rare. All the celiacs I've met are IgA. Finding healthcare is a nightmare. Just trying to help. B  
    • Scott Adams
      It sounds like you've been through a lot with your son's health journey, and it's understandable that you're seeking answers and solutions. Given the complexity of his symptoms and medical history, it might be beneficial to explore a few avenues: Encourage your son to keep a detailed journal of his symptoms, including when they occur, their severity, any triggers or patterns, and how they impact his daily life. This information can be valuable during medical consultations and may help identify correlations or trends. Consider seeking opinions from specialized medical centers or academic hospitals that have multidisciplinary teams specializing in gastrointestinal disorders, especially those related to Celiac disease and Eosinophilic Esophagitis (EOE). These centers often have experts who deal with complex cases and can offer a comprehensive evaluation. Since you've already explored alternative medicine with a nutrition response doctor and a gut detox diet, you may want to consider consulting a functional medicine practitioner. They take a holistic approach to health, looking at underlying causes and imbalances that may contribute to symptoms. Given his low vitamin D levels and other nutritional markers, a thorough nutritional assessment by a registered dietitian or nutritionist specializing in gastrointestinal health could provide insights into any deficiencies or dietary adjustments that might help alleviate symptoms. In addition to routine tests, consider asking about more specialized tests that may not be part of standard screenings. These could include comprehensive stool analyses, food intolerance testing, allergy panels, or advanced imaging studies to assess gut health.
    • Nacina
      Hello, I am a 45 year old mom, who was diagnosed at 29 with Celiac. My now 14 year old son was diagnosed just before his 4th birthday. Needless to say, we are old pros with the diet. He was experiencing some issues, overall health took a major plummet a year ago, and through a bit of work, was diagnosed with EOE. Tried diet alone, but his follow up endoscopy didn't show the improvements his DR. wanted to see, so I tried the medication. (Steroid). He became extremely backed up, and they had him taking Miralax daily. His health plummeted. He is a straight A honor's 8th grader who plays club soccer very competitively. His health continued to decline and at 13 had a colonoscopy and another upper gi. (He was still compacted even with the prep). I finally pulled him off all meds and mira lax, after reading much negative literature online, and put him on a gut detox diet and took him to a nutrition response dr. Finally things have improved. However...over a year later and he is having relapse stomach pain, debilitating stomach pain. Missing a day of school a week, to three this week. This is where we downward spiral with him. He says it doesn't feel the same as when he has gotten backed up before. He is eating prunes, taking his supplements, drinking water...all of the things. Yet, he is feeling horrible. Pain is abdomen, headache, lethargy, diarrhea . He is on a strict gluten dairy, egg free diet. He has adapted well in regards to diet. But I feel like we are missing something here. He is too active, too outgoing to be feeling sick all of the time. His Bilirubin is constantly high. His white blood count always runs slightly low. His vitamin D was very low last time he ran tests, (last month) when he was sick for a week. His celiac markers show negative, so it isn't that. His last endoscopy showed no Eosinaphils in his esophagus.  I have taken him to multiple Ped. Gastro specialists. They run tests, and we get zero answers. I meticulously go through labs, hoping to make some sense and maybe catch something. Any thoughts or ideas would greatly be appreciated. 
    • trents
      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
    • Fluka66
      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
×
×
  • Create New...