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

Fatigue, hair loss and latest labwork

Stacy0w

Recommended Posts

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!  

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

Celiac.com Sponsor (A8-M):


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. :-/

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

Celiac.com Sponsor (A8-M):


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.  

Open Original Shared Link

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.  

Archived

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

Go to topic listing

  • 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. knitty kitty
      - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

      @catnapt, Wheat germ has very little gluten in it. Gluten is the carbohydrate storage protein, what the flour is made from, the fluffy part. Just like with beans, there's the baby plant that will germinate ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein. Wheat germ is the baby plant inside a kernel of wheat...
    2. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      Supplements for those Diagnosed with Celiac Disease

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3. Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C. Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine. Weight...
    3. Florence Lillian
      - Florence Lillian replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free. I have a cupboard full of supplements that did not agree...
    4. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

      highly unlikely NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean...
    5. cristiana
      - cristiana replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      21

      Insomnia help

      Thank you for your post, @nanny marley It is interesting what you say about 'It's OK not to sleep'. Worrying about sleeping only makes it much harder to sleep. One of my relatives is an insomniac and I am sure that is part of the problem. Whereas I once had a neighbour who, if she couldn't sleep, would simply get up again, make a cup of tea, read,...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,354
    • Most Online (within 30 mins)
      7,748
    Gracieruizzz
    Newest Member
    Gracieruizzz
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt, Wheat germ has very little gluten in it.  Gluten is  the carbohydrate storage protein, what the flour is made from, the fluffy part.  Just like with beans, there's the baby plant that will germinate  ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein.   Wheat germ is the baby plant inside a kernel of wheat, and bran is the protective covering of the kernel.   Little to no gluten there.   Large amounts of lectins are in wheat germ and can cause digestive upsets, but not enough Gluten to provoke antibody production in the small intestines. Luckily you still have time to do a proper gluten challenge (10 grams of gluten per day for a minimum of two weeks) before your next appointment when you can be retested.  
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3.  Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C.  Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine.   Weight gain with a voracious appetite is something I experienced while malnourished.  It's symptomatic of Thiamine B1 deficiency.   Conversely, some people with thiamine deficiency lose their appetite altogether, and suffer from anorexia.  At different periods on my lifelong journey, I suffered this, too.   When the body doesn't have sufficient thiamine to turn food, especially carbohydrates, into energy (for growth and repair), the body rations what little thiamine it has available, and turns the carbs into fat, and stores it mostly in the abdomen.  Consuming a high carbohydrate diet requires additional thiamine to process the carbs into energy.  Simple carbohydrates (sugar, white rice, etc.) don't contain thiamine, so the body easily depletes its stores of Thiamine processing the carbs into fat.  The digestive system communicates with the brain to keep eating in order to consume more thiamine and other nutrients it's not absorbing.   One can have a subclinical thiamine insufficiency for years.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so the symptoms can wax and wane mysteriously.  Symptoms of Thiamine insufficiency include stunted growth, chronic fatigue, and Gastrointestinal Beriberi (diarrhea, abdominal pain), heart attack, Alzheimer's, stroke, and cancer.   Thiamine improves bone turnover.  Thiamine insufficiency can also affect the thyroid.  The thyroid is important in bone metabolism.  The thyroid also influences hormones, like estrogen and progesterone, and menopause.  Vitamin D, at optimal levels, can act as a hormone and can influence the thyroid, as well as being important to bone health, and regulating the immune system.  Vitamin A is important to bone health, too, and is necessary for intestinal health, as well.   I don't do dairy because I react to Casein, the protein in dairy that resembles gluten and causes a reaction the same as if I'd been exposed to gluten, including high tTg IgA.  I found adding mineral water containing calcium and other minerals helpful in increasing my calcium intake.   Malabsorption of Celiac affects all the vitamins and minerals.  I do hope you'll talk to your doctor and dietician about supplementing all eight B vitamins and the four fat soluble vitamins because they all work together interconnectedly.  
    • Florence Lillian
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Florence Lillian · Posted

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
    • cristiana
      Insomnia help

      By cristiana · Posted

      Thank you for your post, @nanny marley It is interesting what you say about 'It's OK not to sleep'. Worrying about sleeping only makes it much harder to sleep.  One of my relatives is an insomniac and I am sure that is part of the problem.  Whereas I once had a neighbour who, if she couldn't sleep, would simply get up again, make a cup of tea, read, do a sudoku or some other small task, and then go back to bed when she felt sleepy again.  I can't think it did her any harm - she lived  well into her nineties. Last week I decided to try a Floradix Magnesium supplement which seems to be helping me to sleep better.  It is a liquid magnesium supplement, so easy to take.  It is gluten free (unlike the Floradix iron supplement).  Might be worth a try.        
×
×
  • 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.