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Fatigue, hair loss and latest labwork

Stacy0w

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icelandgirl Proficient
icelandgirl
Posted

I agree with cycling!  Your Dr's are misinformed.  On a strict, gluten free diet your antibodies should come down.  They should be tested at least once a year.  I switched Dr's when I went back after 6 months and asked to be retested because he told me the same thing and I knew he was wrong.  When I had them tested at that time, by a new Dr, they were still elevated, but had come down by about half.  A year later they were normal and this summer they were as well.

Insist on this test!  

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peps Newbie
peps
Posted

Hi all. This question goes out to the men that have celiac. I recently got diagnosed with the disease about a week ago, and i am starting to feel well now that i am not eating gluten. I had all of the classic symptoms, Stomach pain, hair loss, nose bleeds, fatigue, ect. The one symptom that I have that I haven't seen any man post is penile burning. My question is, has anyone had this problem when they were glutenated? My second question is this, My stomach is starting to feel better, but the penile burning is driving me up the wall and doesn't seem to be getting any better. My doctor says it will, but I haven't seen any changes. If anything it feels as if its getting worse. If you can get back to me as soon as possible that'd be awesome, because i'm seriously in a ton of pain. It burns all day everyday.

kenlove Rising Star
kenlove
Posted
18 minutes ago, peps said:

Hi all. This question goes out to the men that have celiac. I recently got diagnosed with the disease about a week ago, and i am starting to feel well now that i am not eating gluten. I had all of the classic symptoms, Stomach pain, hair loss, nose bleeds, fatigue, ect. The one symptom that I have that I haven't seen any man post is penile burning. My question is, has anyone had this problem when they were glutenated? My second question is this, My stomach is starting to feel better, but the penile burning is driving me up the wall and doesn't seem to be getting any better. My doctor says it will, but I haven't seen any changes. If anything it feels as if its getting worse. If you can get back to me as soon as possible that'd be awesome, because i'm seriously in a ton of pain. It burns all day everyday.

Never did have burning when I was first diagnosed by endoscopic exam about 12 years ago but my testosterone level  was literally wiped out. Other basic hormones where dangerously ow and had to go on replacement therapy. You might want to have your levels check as a precaution. Not sure if the burning  could be related but it might be possible. Good luck.

  • 2 weeks later...
Stacy0w Enthusiast
Stacy0w
Posted
  • Author

Long pause because I wanted my latest lab results and they took forever.  Cortisol, ACTH, estadiol, vitamin a and whatever else were all fine. They are retesting my thyroid in four weeks. I definitely bought the wrong product and glutened myself a few weeks back so I guess that has to wait which really irritates me. My gliadin iga ab was greater than 100 almost two yrs ago at diagnosis so I guess sometime next yr I'll redo that and hope it's down :-/. Trying to do all the right things and get bad information from doctors.  Thanks for all the info you've shared and helped me with. I've had lab work every month since May and will next month for the thyroid again. Sigh. 

cyclinglady Grand Master
cyclinglady
Posted
38 minutes ago, Stacy0w said:

Long pause because I wanted my latest lab results and they took forever.  Cortisol, ACTH, estadiol, vitamin a and whatever else were all fine. They are retesting my thyroid in four weeks. I definitely bought the wrong product and glutened myself a few weeks back so I guess that has to wait which really irritates me. My gliadin iga ab was greater than 100 almost two yrs ago at diagnosis so I guess sometime next yr I'll redo that and hope it's down :-/. Trying to do all the right things and get bad information from doctors.  Thanks for all the info you've shared and helped me with. I've had lab work every month since May and will next month for the thyroid again. Sigh. 

Did they run a DGP IGA?  While your DGP can take over a year to come down, I still think you should be getting tested every six months until you see a downward trend.  I am not making that up.  Google it.  

My DGP was off the charts when I was glutened last summer.  My symtoms were severe, yet at diagnosis, I just had anemia.  It took six months for all symptoms to completely resolve (rashes and hives took the longest and three month to regain dairy).  What I am saying is that symptoms for celiac disease can change.  

 

Stacy0w Enthusiast
Stacy0w
Posted
  • Author

They didn't. The labs were run two and a half weeks ago and before I got confirmation on here that it should be done despite my drs saying otherwise. I was glutened the week prior anyway so it would've been high regardless.  It's all very frustrating. So I guess I'll wait five or six months and go back and demand it vs asking about it. 

  • 1 month later...
Stacy0w Enthusiast
Stacy0w
Posted
  • Author

O. Latest thyroid labs are back and "normal". I didn't ask numbers because I was frustrated. I had them run the gliadin iga ab while I was there too. That was the only test that was positive when I was diagnosed two years ago. My level then was >100. This time the level was 40. I know I was glutened the end of September so I feel 40 means I'm doing pretty well avoiding gluten minus that one time. So no real answers I don't think. :-/

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icelandgirl Proficient
icelandgirl
Posted

I am sorry for your frustration!  It certainly could be that you're getting over being glutened.  But, I wouldn't take normal values as an answer on thyroid.  I'd call and get those values.  If they're not in the optimal range (TSH around 1 and Free T3 and Free T4 between 50-75% of the range), ask for a trial of thyroid medication.  Just my opinion, of course. ?

Stacy0w Enthusiast
Stacy0w
Posted
  • Author

The endos office called but I didn't answer. I wanted to see what people here thought first haha. To me I think thyroid, but I'm starting to think I'm just crazy.  My numbers are always on the low end though. I had symptoms months before the glutening. When I call back tomorrow I'll ask about thyroid meds. IF she agrees is there anything I should ask for or avoid?  If she says no I was thinking of trying a t3 supplement. Shrug. Not sure what else to try. 

cyclinglady Grand Master
cyclinglady
Posted
18 hours ago, Stacy0w said:

O. Latest thyroid labs are back and "normal". I didn't ask numbers because I was frustrated. I had them run the gliadin iga ab while I was there too. That was the only test that was positive when I was diagnosed two years ago. My level then was >100. This time the level was 40. I know I was glutened the end of September so I feel 40 means I'm doing pretty well avoiding gluten minus that one time. So no real answers I don't think. :-/

With your slightly elevated calcium, has parathyroid issues been ruled out?  Look at this site's yellow box of symptoms.  Read about even slightly raised calcium can be overlooked by doctors, but the impact to the patient can be awful.  

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cyclinglady Grand Master
cyclinglady
Posted
18 hours ago, Stacy0w said:

O. Latest thyroid labs are back and "normal". I didn't ask numbers because I was frustrated. I had them run the gliadin iga ab while I was there too. That was the only test that was positive when I was diagnosed two years ago. My level then was >100. This time the level was 40. I know I was glutened the end of September so I feel 40 means I'm doing pretty well avoiding gluten minus that one time. So no real answers I don't think. :-/

The elevation in your DGP still indicates that your celiac disease is active.  Going down?  Going up?  Maybe.  You do not know what the levels were just prior to your getting glutened.  Even though your symptoms might improve (or not), about 1/3 of celiacs do not experience intestinal healing.   Consider the "Dr. Fasano" diet (eat whole foods that are naturally gluten-free for the most part).    It might be worth a shot.  Also really evaluate your diet.  gluten may be sneaking in despite your best efforts.  

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    • trents
      Hidden Gluten in distilled vinegar

      By trents · Posted

      Take it easy! I was just prompting you for some clarification.  In the distillation process, the liquid is boiled and the vapor descends up a tube and condenses into another container as it cools. What people are saying is that the gluten molecules are too large and heavy to travel up with the vapor and so get left behind in the original liquid solution. Therefore, the condensate should be free of gluten, no matter if there was gluten in the original solution. The explanation contained in the second sentence I quoted from your post would not seem to square with the physics of the distillation process. Unless, that is, I misunderstood what you were trying to explain.
    • Mynx
      Hidden Gluten in distilled vinegar

      By Mynx · Posted

      No they do not contradict each other. Just like frying oil can be cross contaminated even though the oil doesn't contain the luten protein. The same is the same for a distilled vinegar or spirit which originally came from a gluten source. Just because you don't understand, doesn't mean you can tell me that my sentences contradict each other. Do you have a PhD in biochemistry or friends that do and access to a lab?  If not, saying you don't understand is one thing anything else can be dangerous to others. 
    • Mynx
      Hidden Gluten in distilled vinegar

      By Mynx · Posted

      The reason that it triggers your dermatitis herpetiformis but not your celiac disease is because you aren't completely intolerant to gluten. The celiac and dermatitis herpetiformis genes are both on the same chronometer. Dermatitis herpetoformus reacts to gluten even if there's a small amount of cross contamination while celiac gene may be able to tolerate a some gluten or cross contamination. It just depends on the sensitivity of the gene. 
    • trents
      Hidden Gluten in distilled vinegar

      By trents · Posted

      @Mynx, you say, "The reason this is believed is because the gluten protein molecule is too big to pass through the distillation process. Unfortunately, the liquid ie vinegar is cross contaminated because the gluten protein had been in the liquid prior to distillation process." I guess I misunderstand what you are trying to say but the statements in those two sentences seem to contradict one another.
    • Mynx
      Hidden Gluten in distilled vinegar

      By Mynx · Posted

      It isn't a conjecture. I have gotten glitened from having some distilled white vinegar as a test. When I talked to some of my scientists friends, they confirmed that for a mall percentage of people, distilled white vinegar is a problem. The cross contamination isn't from wheat glue in a cask. While yhe gluten protein is too large to pass through the distillation process, after the distillation process, the vinegar is still cross contaminated. Please don't dismiss or disregard the small group of people who are 100^ gluten intolerant by saying things are conjecture. Just because you haven't done thr research or aren't as sensitive to gluten doesn't mean that everyone is like you. 
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