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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,017
    • Most Online (within 30 mins)
      7,748

    Sjcucinotta
    Newest Member
    Sjcucinotta
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • sleuth
      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
    • knitty kitty
      Please do more research before you settle on nicotine. Dr. Paul New house is a psychiatrist.  His latest study involves the effect of nicotine patches on Late Life Depression which has reached no long term conclusions about the benefits.   Effects of open-label transdermal nicotine antidepressant augmentation on affective symptoms and executive function in late-life depression https://pubmed.ncbi.nlm.nih.gov/39009312/   I'm approaching the subject from the Microbiologist's point of view which shows nicotine blocks Thiamine B1 uptake and usage:   Chronic Nicotine Exposure In Vivo and In Vitro Inhibits Vitamin B1 (Thiamin) Uptake by Pancreatic Acinar Cells https://pubmed.ncbi.nlm.nih.gov/26633299/   While supplementation with thiamine in the form Benfotiamine can protect from damage done by  nicotine: Benfotiamine attenuates nicotine and uric acid-induced vascular endothelial dysfunction in the rat https://pubmed.ncbi.nlm.nih.gov/18951979/   I suggest you study the beneficial effects of Thiamine (Benfotiamine and TTFD) on the body and mental health done by Dr. Derrick Lonsdale and Dr. Chandler Marrs.  Dr. Lonsdale had studied thiamine over fifty years.   Hiding in Plain Sight: Modern Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/ I suggest you read their book Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition.     Celiac Disease is a disease of malabsorption causing malnutrition.  Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/
    • sleuth
      Thanks for your response.  Everything you mentioned he is and has been doing.  Tobacco is not the same as nicotine.  Nicotine, in the form of a patch, does not cause gastrointestinal irritation.  Smoking does. He is not smoking.  Please do your research before stating false information. Dr. Paul Newhouse has been doing research on nicotine the last 40 years at Vanderbilt University Medical Center.  
    • Jmartes71
      Im so frustrated and still getting the run around trying to reprove my celiac disease which my past primary ignored for 25 years.I understand that theres a ray of medical that doctors are limited too but not listening and telling the patient ( me) that im not as sensitive as I think and NOT celiac!Correction Mr white coat its not what I think but for cause and affect and past test that are not sticking in my medical records.I get sick violently with foods consumed, not eating the foods will show Im fabulous. After many blood draws and going through doctors I have the HLA- DQ2 positive which I read in a study that Iran conducted that the severity in celiac is in that gene.Im glutenfree and dealing with related issues which core issue of celiac isn't addressed. My skin, right eye, left leg diagestive issues affected. I have high blood pressure because im in pain.Im waisting my time on trying to reprove that Im celiac which is not a disease I want, but unfortunately have.It  has taken over my life personally and professionally. How do I stop getting medically gaslight and get the help needed to bounce back if I ever do bounce back to normal? I thought I was in good care with " celiac specialist " but in her eyes Im good.Im NOT.Sibo positive, IBS, Chronic Fatigue just to name a few and its all related to what I like to call a ghost disease ( celiac) since doctors don't seem to take it seriously. 
    • trents
      @Martha Mitchell, your reaction to the lens implant with gluten sounds like it could be an allergic reaction rather than a celiac reaction. It is possible for a celiac to be also allergic to gluten as it is a protein component in wheat, barley and rye.
×
×
  • 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.