Jump to content
  • 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 Our Content
    eNewsletter
    Donate

I'm Starting To Suspect This More And More


birdie22

Recommended Posts

birdie22 Enthusiast

I've posted a few times about my ongoing symptoms for the past 12 mos: heartburn, bloating after meals, canker sores, headaches, fatigue, fuzzy/hungover feeling, etc. My ttg IGA was neg (total IGA normal). I'm now waiting for results on my GDP and a few other things. Well I was talking to my mom today and we were updating each other on our health issues and she was telling me how she her blood work came back showing low Vit D and b-12. She's had depression for at least 10yrs and even on meds is suffering fatigue. She's also been on meds for many years for reflux. And like me she gets frequent headaches, canker sores, and is an easy bruiser. She has a follow up w/ her doc next month and I told her to demand a celiac panel.

Given how I've been feeling for the past 12mos, the fact that I started seeing improvement on a brief elim diet, and her Vit deficiencies, I'm really believing more and more that gluten is the cause of my problems.

In addition to the GDP, the doc ran AGA, ferritin, thyroid, CBC and a complete metabolic panel (including D and B). I had all but the celiac tests done in Oct 2010 and they were all normal so it'll be interesting to see if anything has changed.


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



Celiac.com Sponsor (A8-M):



AVR1962 Collaborator

Did you and your mom decided to go gluten free? The vit deficiencies are real important. I think many times we pass vits off, many say they are a waste of money, etc. When the body does not receive the proper nutrients for whatever reason it suffers, long-term this can be hard to recover from so it is very important that you see the labwork with your own eyes. Some docs will not mention low levels (maybe because they are borderline, I don't know), it's happen to me more than once. All the other tests are great to have had run. Let us know how it works out for you.

mushroom Proficient

Your test results should reveal a lot. Please post your results with the ranges so we can see where you are. :)

birdie22 Enthusiast

Your test results should reveal a lot. Please post your results with the ranges so we can see where you are. :)

I hope to get the results this week and I always request that they fax me a copy so I can review them myself. I am going gluten-free again (started this weekend) but my my isn't until after she does the celiac blood panel next month.

I think what bothers me most is the fatigue. Friday night I was asleep on the couch by 8pm and woke up at 6am feeling almost hungover. Yes, I'm a full time working mom with 2 kids under age 4, but I'm only 36 and I have a DH who does a great deal to assist. I shouldn't be this tired or lack this much motivation to do anything.

birdie22 Enthusiast

I've gotten most of my results back and everything is in the normal range. Still waiting on the AGA and GDP. My CBC, chem 7, metabolic panel, thyroid, ferritin, and vit B and D were all normal and comparable to the values I got 12mo ago. In fact my D was up to 56 (was 32 a yr ago). I was hoping that hct, ferritin or vitamins would come back on the low end just to help explain why I'm so fatigued. I was also hoping that the results would show levels getting lower from a year ago to correspond with my symptoms increasing. But alas, no.

I've been gluten-free since Sunday and keeping that way until my follow up mid-Dec to see if perhaps I'm just gluten sensativ.

Roda Rising Star

You may want to consider getting a full thyroid panel done also. Tests include: TSH, free T3, free T4, and thyroid antibody tests. Low thyroid can cause fatigue and other symptoms. Thyroid problems are commonly seen with celiacs.

Tarantula44 Apprentice

You may want to ask for an adrenal panel as well as thyroid. If adrenals are not functioning properly you need to fix these first, before thyroid. Seems like only naturopaths test properly for adrenal function. You want to ask for a saliva circadian test for cortisol and DHEA. Also hormones such as progesterone could be low which could cause fatigue, or an estrogen dominance situation. Hormones are big players as well as vitamins in energy levels.


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



Celiac.com Sponsor (A8-M):



birdie22 Enthusiast

You may want to consider getting a full thyroid panel done also. Tests include: TSH, free T3, free T4, and thyroid antibody tests. Low thyroid can cause fatigue and other symptoms. Thyroid problems are commonly seen with celiacs.

T4 and TSH and antibody were run 10/2010 and were normal and T4 and TSH were run again this time and were normal and at the same level as a year ago.

Also hormones such as progesterone could be low which could cause fatigue, or an estrogen dominance situation. Hormones are big players as well as vitamins in energy levels.

I have been curious about hormone levels. This may be my next testing request.

Roda Rising Star

I used to have normal TSH and free T4, so nobody would treat my symptoms. When I first went to my endocrinologist my free T3 was tested and was low despite the other things being normal. The free T3 is a measure of the active hormone. Free T4 in the prehormone that breaks down into the T3. I was told I was not converting well and my endo now goes more by it than my TSH.

birdie22 Enthusiast

I used to have normal TSH and free T4, so nobody would treat my symptoms. When I first went to my endocrinologist my free T3 was tested and was low despite the other things being normal. The free T3 is a measure of the active hormone. Free T4 in the prehormone that breaks down into the T3. I was told I was not converting well and my endo now goes more by it than my TSH.

This is helpful info. Thanks. I'm pretty sure the doc didn't test T3.

beachbirdie Contributor

This is helpful info. Thanks. I'm pretty sure the doc didn't test T3.

I also tested "normal" for TSH and T4, though my results for Free T4 were at the very bottom of the range. My TSH was at the top of the range. I couldn't get anyone to listen for symptoms for years.

When my new doc tested my Free T3 is was well below the range. Free T3 is the one your cell receptors pick up and use for metabolism, Free T4 is the form for storage. The normally functioning body converts T3 to T4 as needed; the autoimmune one doesn't do so well at converting, and many of the antibodies destroy the proteins that carry the hormone.

Probably too much information! All to say that thyroid is very complicated, and should be tested more thoroughly in a person with symptoms.

Good luck.

birdie22 Enthusiast

I also tested "normal" for TSH and T4, though my results for Free T4 were at the very bottom of the range. My TSH was at the top of the range. I couldn't get anyone to listen for symptoms for years.

When my new doc tested my Free T3 is was well below the range. Free T3 is the one your cell receptors pick up and use for metabolism, Free T4 is the form for storage. The normally functioning body converts T3 to T4 as needed; the autoimmune one doesn't do so well at converting, and many of the antibodies destroy the proteins that carry the hormone.

Probably too much information! All to say that thyroid is very complicated, and should be tested more thoroughly in a person with symptoms.

Good luck.

Thank you. Would the symptoms present similarly to hypothyroid?

mushroom Proficient
The normally functioning body converts T3 to T4 as needed

I believe beachbirdie meant to say that the normally functioning body converts T4 to T3....

beachbirdie Contributor

Thank you. Would the symptoms present similarly to hypothyroid?

For me, yes. Hashimoto's is a condition in which antibodies attack the thyroid or the hormone-carrying proteins, and the end result is hypothyroid. Also, hypothyroid can present with symptoms some might associate with hyper-thyroid. I suffered terrible palpitations, anxiety, insomnia, yet was hypothyroid.

I believe beachbirdie meant to say that the normally functioning body converts T4 to T3....

Oops! Thanks, Mushroom! That is what I meant! :wacko:

birdie22 Enthusiast

Thanks all for the continued information. Very helpful.

My T4 was 1.3 (ref 0.9-1.8)

TSH was 1.18 (ref 0.35-5.50)

I'll definitely ask about T3 next month.

Also noticed that my Ferritin, while "normal" seems to be at the low end...40 (ref 10-291). Wondering if a low normal ferritin is contributing to the fatigue.

Roda Rising Star

Thanks all for the continued information. Very helpful.

My T4 was 1.3 (ref 0.9-1.8)

TSH was 1.18 (ref 0.35-5.50)

I'll definitely ask about T3 next month.

Also noticed that my Ferritin, while "normal" seems to be at the low end...40 (ref 10-291). Wondering if a low normal ferritin is contributing to the fatigue.

Yes low ferritin can cause symptoms. I just wish mine was at 40 right now. I had gotten it back up to around that level and felt decent, but its starting to drop again and I have been symptomatic. My serum iron is low too. I just started supplementing again so I'm hoping to get it back up.

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - chrisinpa commented on Scott Adams's article in Skin Problems and Celiac Disease
      2

      Celiac Disease and Skin Disorders: Exploring a Genetic Connection

    2. - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      My journey is it gluten or fiber?

    3. - trents replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Issues before diagnosis

    4. - trents commented on Jefferson Adams's article in Other Diseases and Disorders Associated with Celiac Disease
      6

      Celiac Disease Patients Face Higher Risk of Systemic Lupus

    5. - knitty kitty replied to EndlessSummer's topic in Food Intolerance & Leaky Gut
      2

      Dizziness after eating green beans?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,691
    • Most Online (within 30 mins)
      7,748

    4Nic8ion
    Newest Member
    4Nic8ion
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities.   If you are trying to add more fiber to your diet to ease constipation, considering eating more leafy green vegetables and cruciferous vegetables.  Not only are these high in fiber, they also are good sources of magnesium.  Many newly diagnosed are low in magnesium and B vitamins and suffer with constipation.  Thiamine Vitamin B1 and magnesium work together.  Thiamine in the form Benfotiamine has been shown to improve intestinal health.  Thiamine and magnesium are important to gastrointestinal health and function.  
    • trents
      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
    • knitty kitty
      @EndlessSummer, You said you had an allergy to trees.  People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits.  Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease.   Switching to a low histamine diet for a while can give your body time to rid itself of the extra histamine the body makes with Celiac disease and histamine consumed in the diet.   Vitamin C and the eight B vitamins are needed to help the body clear histamine.   Have you been checked for nutritional deficiencies?
    • sha1091a
      I found out the age of 68 that I am a celiac. When I was 16, I had my gallbladder removed when I was 24 I was put on a medication because I was told I had fibromyalgia.   going to Doctor’s over many years, not one of them thought to check me out for celiac disease. I am aware that it only started being tested by bloodwork I believe in the late 90s, but still I’m kind of confused why my gallbladder my joint pain flatulent that I complained of constantly was totally ignored. Is it not something that is taught to our medical system? It wasn’t a Doctor Who asked for the test to be done. I asked for it because of something I had read and my test came back positive. My number was quite high.Are there other people out here that had this kind of problems and they were ignored? 
    • trents
      Welcome to celiac.com, @EndlessSummer! Do you react to all vegetables or just specific kinds or families of them? What you describe with green beans sounds like it has an anaphylaxis component. Like you, walnuts are a problem for me. They will often give me a scratchy throat so I try to avoid them. Does it matter if the vegies are raw or will-cooked in how you react to them?
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.