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 New And Have Some Questions


Dawnsister

Recommended Posts

Dawnsister Rookie

Hi everyone - I'm new here, I'm a 39 yr old Mom of 3 and I live in the Boston area. I'm married and my husband has been pretty supportive. I'm getting tired of feeling like cr*p all the time, this has been going on for about 3-4 mo.

I have been having some symptoms that the Dr.s are looking at, so far the tests that I've had done are a CAT scan and last an endoscopy. So far the results have been from teh CAT scan fluid in my small intestine and I'm waiting for the biopsy results. They did look for ulcers because my Dad had them, but that looked fine.

The symptoms that I have are lots of bloating in the upper abdominal area, with LOTS of fullness feelings. A lot times I don't want to eat because I already feel full, or if I do it it's a small amount because I feel full after a small meal. I did feel better eating things like tapioca or cream of wheat, until the thought was I might be gluten intolerant. Some days are better than others, and some days I'm just so tired or some tasks just wipe me out that I want to lay down and take a nap, my limbs are so heavy. Also, I have an almost continous upset stomach, not reflux, just upset.

The other wierd thing is that I'm losing my hair - the hair up near the front of my head is coming out, especially when I wash it!! I have always had fine hair, but a ton of it, and the women in my family have never lost their hair, so this has kind of freaked me out. Yesterday I went and got my hair cut up above my shoulders because it was looking a little ratty.

I don't know a lot about celiac, I also feel like if they come back and tell me everything is normal I'm going to scream. My GP told me that it's a possibility, and I asked him wouldn't I have known after all this time and he said 'not necessarily'... being Italian, being gluten intolerant would really be a HUGE lifestyle change, but at this point I'm so sick all the time I think it would be a relief.


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



Celiac.com Sponsor (A8-M):



TrillumHunter Enthusiast

Sounds like you are going through a rough time! Sad to tell you but you will find some research that links alopecia to celiac disease.

Keep reading and pushing for a diagnosis. It took 13 years for me to get the right diagnosis. This is a great site and I highly recommend reading the FAQ as they answer many questions. Also, the "old timers" on this board are super patient and helpful.

Take care!

ClaireE Newbie

Hi Dawnsister, I am new to the forum too and thought I would share with you that a few years ago my hair started to fall out and I was devastated but after going to the doctors and having a blood test it turned out I was anemic and there wasn't enough iron in my body for my hair to grow. After a few months of taking iron tablets my hair grew back and was in the best condition it had ever been in. 3 years later and again I have become anemic and just this week tested positive by a blood test for coeliac but I have started to notice hair falling out again but my irons levels are apparently quite low so as I am awaiting for a consultants appointment and hospital tests I feel another trip to the doctors again and the more I probably am stressing about my hair falling out is making the situation worse.

I would advise that you get a blood test to see if you anemic and give you an explanation for your hair loss. Anemia will also make you feel so tired, the last week or so I have felt shattered and easily nod off during the day.

I hope you feel better soon.

Claire

lamp Newbie
Hi Dawnsister, I am new to the forum too and thought I would share with you that a few years ago my hair started to fall out and I was devastated but after going to the doctors and having a blood test it turned out I was anemic and there wasn't enough iron in my body for my hair to grow. After a few months of taking iron tablets my hair grew back and was in the best condition it had ever been in. 3 years later and again I have become anemic and just this week tested positive by a blood test for coeliac but I have started to notice hair falling out again but my irons levels are apparently quite low so as I am awaiting for a consultants appointment and hospital tests I feel another trip to the doctors again and the more I probably am stressing about my hair falling out is making the situation worse.

I would advise that you get a blood test to see if you anemic and give you an explanation for your hair loss. Anemia will also make you feel so tired, the last week or so I have felt shattered and easily nod off during the day.

I hope you feel better soon.

Claire

Hi Dawnsister,

I'm also new to this site. I was diagnosed with Celiac 2 1/2 months ago and then my daughter was diagnosed shortly after. I have also been deeply exhausted and weak, with muscle and joint pain, brain fog and headaches. I also have anemia. I had been misdiagnosed with fibromyalgia for years. The fatigue and weakness frighten me the most because it just feels like I can't move. "Heavy" is a great way to describe it. The good news is that this stuff goes away with the gluten free diet. For me, it has taken a long time for the fatigue to lessen. I seem to be getting better in baby steps, but at least I am getting better. From what I've read, the high levels of antibodies, plus the inflammation in the intestines does cause fatigue in many people with Celiac disease. So hang in there. If your endoscopy comes back positive, then at least those symptoms should go away with the diet. Also, I've found many pastas and sauces that are gluten free. So far I've liked them alot.

Good luck and I hope you feel better quickly!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,546
    • Most Online (within 30 mins)
      7,748

    KimberlyAnne76
    Newest Member
    KimberlyAnne76
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
    • Jsingh
      Hi,  I care for my seven year old daughter with Celiac. After watching her for months, I have figured out that she has problem with two kinds of fats- animal fat and cooking oils. It basically makes her intestine sore enough that she feels spasms when she is upset. It only happens on days when she has eaten more fat than her usual every day diet. (Her usual diet has chia seeds, flaxseeds, and avocado/ pumpkin seeds for fat and an occasional chicken breast.) I stopped using cooking oils last year, and when I reintroduced eggs and dairy, both of which I had held off for a few months thinking it was an issue of the protein like some Celiac patients habe mentioned to be the case, she has reacted in the same fashion as she does with excess fats. So now I wonder if her reaction to dairy and eggs is not really because of protein but fat.   I don't really have a question, just wondering if anyone finds this familiar and if it gets better with time.  Thank you. 
    • Chanda Richard
      Hello, My name is Chanda and you are not the only one that gose through the same things. I have found that what's easiest for me is finding a few meals each week that last. I have such severe reactions to gluten that it shuts my entire body down. I struggle everyday with i can't eat enough it feels like, when I eat more I lose more weight. Make sure that you look at medication, vitamins and shampoo and conditioner also. They have different things that are less expensive at Walmart. 
    • petitojou
      Thank you so much! I saw some tips around the forum to make a food diary and now that I know that the community also struggles with corn, egg and soy, the puzzle pieces came together! Just yesterday I tried eating eggs and yes, he’s guilty and charged. Those there are my 3 combo nausea troublemakers. I’m going to adjust my diet ☺️ Also thank you for the information about MCAS! I’m from South America and little it’s talked about it in here. It’s honestly such a game changer now for treatment and recovery. I know I’m free from SIBO and Candida since I’ve been tested for it, but I’m still going to make a endoscopy to test for H. Pylori and Eosinophilic esophagitis (EoE). Thank you again!! Have a blessed weekend 🤍
    • knitty kitty
      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
×
×
  • 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.