Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Aaarrrggghhh!

L.A.

By L.A.
in Coping with Celiac Disease

Recommended Posts

L.A. Contributor
L.A.
Posted

Why can't I seem to put on weight? And, does anyone have a problem with their hair not being as full as it use to be?

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

Celiac.com Sponsor (A8-M):


eKatherine Apprentice
eKatherine
Posted

Being malnourished can cause your hair to fall out. Hopefully if you can get your diet under control and put on weight, it will grow back, mostly. I've heard former anorexics say their hair fell out and hardly got thicker again after their recoveries.

L.A. Contributor
L.A.
Posted
  • Author
Why can't I seem to put on weight? And, does anyone have a problem with their hair not being as full as it use to be?

Thanks for the reply. I have been gluten-free for 5 years now and can't put on weight--weigh 102lbs and am 5'2". I am such a freak about my diet i bring my own dinner to my Mom's. I have noticed lately that my hair seems to be thinning. The Dr said i was anemic and put me on iron and vitamin supplements--that was 6 months ago i don't see any improvement.

eKatherine Apprentice
eKatherine
Posted

Maybe somebody else can help you. I'm one of those people who is solidly built. Some people just happen to have their normal weight a lot lower than other people, and it's as hard for you to gain as it is for me to lose.

It could be natural hair thinning, which just happens, though a doctor might be able to prescribe something.

DingoGirl Enthusiast
DingoGirl
Posted

My hair changed DRAMATICALLY in the last year, when I was extremely anemic and had a very advanced case of Celiac and didn't know it. I am almost four months gluten free and my hair just stopped falling out, and I have been taking iron and other supplements for months. Are you quite sure all of your supplements are gluten-free? I also was very underweight and couldn't keep weight on as food slid right through me....but gained 15 pounds immediately upon giving up gluten. Have you checked your thyroid? What does your diet mostly consist of?

Keep us posted....there are so many informed people here, keep checking back!

Blessings -

gabrielle Contributor
gabrielle
Posted
Thanks for the reply. I have been gluten-free for 5 years now and can't put on weight--weigh 102lbs and am 5'2". I am such a freak about my diet i bring my own dinner to my Mom's. I have noticed lately that my hair seems to be thinning. The Dr said i was anemic and put me on iron and vitamin supplements--that was 6 months ago i don't see any improvement.

I am the same size as you 5'2" and roughly 102, it fluctuates between 102-105. The good thing is that we are not UNDER weight. There are girls that are like 5'8" and only 115-120 pounds. I am very unhappy, however, with my weight- I was always on the thicker size- before being diagnosed I was 20 pounds heavier and then dramatically lost it all. I don't feel myself, but I know that I do not get 2000 calories a day, and that is a big reason I am not putting on weight. I really feel that it is hard to put on weight with this diet- I don't think iron/vitamins will help put on weight- you just need to really eat, I guess. I started taking Ensure, so I will let you know how that goes- but I think most people on this site do have problems putting back on weight.

CarlaB Enthusiast
CarlaB
Posted

Eating more calories should help with the weight. What prompted me to write was the comment that you don't eat 2000 calories a day. I maintain 130, I'm 5'8". I eat waaayyy more than 2000 calories in a day! I went out to lunch today with my husband, ordered what my 15 year old son normally eats and gets full on, and you know how they eat, then ordered another plate of the same thing. I thought the waitress was going to faint! Within an hour, I was hungry again. I eat as much or more than my 195 pound husband; double what my 18 year old daughter who weighs 137 eats.

After dinner last night, I ate a box of kettle corn that I got from Wild Oats. The box had 500 calories, this was after dinner! For another snack in between meals, I ate a bag of roasted almonds that had almost 500 calories. So I had 1000 calories just in snacks, and that's not counting my latte! I look for stuff that has concentrated calories so that I don't have to eat as much as far as quantity.

So, it may take a lot more food than you think to be able to gain weight, or even maintain once you do gain. I think eating has become my hobby :o;)

Can't answer for the hair ... mine has always been thick, but it isn't falling out as much as it used to.

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

Celiac.com Sponsor (A8-M):


lorka150 Collaborator
lorka150
Posted

LA... I understand how you feel. Try not to get frustrated!

Sidenote: Brookin is a gorgeous town!

L.A. Contributor
L.A.
Posted
  • Author
My hair changed DRAMATICALLY in the last year, when I was extremely anemic and had a very advanced case of Celiac and didn't know it. I am almost four months gluten free and my hair just stopped falling out, and I have been taking iron and other supplements for months. Are you quite sure all of your supplements are gluten-free? I also was very underweight and couldn't keep weight on as food slid right through me....but gained 15 pounds immediately upon giving up gluten. Have you checked your thyroid? What does your diet mostly consist of?

Keep us posted....there are so many informed people here, keep checking back!

Blessings -

Thanks for your reply--all my vitamins etc are gluten-free. I think I need to have the Doc recheck my iron as he cut the original dosage as it was causing me tummy pains --maybe I'm not getting enough. I take a multi vitamin as well. What other supplements are you taking?

aorona Rookie
aorona
Posted

It just may take time for you to gain weight. When I was diagnosed with celiac, I started on the gluten free diet and within 2 weeks, I had lost 5 pounds. I am 5'3" and at the beginnnig of the diet I weighed 106. Within a few months, I had gained back the 5 pounds. I have been on the diet for 10 months now and have only gained 2 pounds. I do look healthier though, and my color looks better. It just make take time. You also might want to add more carbs to your meals. Good luck.

OH, I forgot about the hair thing. My hair was very thin and was always falling out and would never grow before I was diagnosed. My hair would only grow about 1 inch over a year. After being gluten free for about 7 months, my hair actually started to grow and became fuller. Now my hair grows 1/2 inch a month. It's great!!! I have cut out all gluten out of my hair products, with the exception of hair color. I just can't live without it!! I started going gray at 24!!!

TEW Newbie
TEW
Posted
It just may take time for you to gain weight. When I was diagnosed with celiac, I started on the gluten free diet and within 2 weeks, I had lost 5 pounds. I am 5'3" and at the beginnnig of the diet I weighed 106. Within a few months, I had gained back the 5 pounds. I have been on the diet for 10 months now and have only gained 2 pounds. I do look healthier though, and my color looks better. It just make take time. You also might want to add more carbs to your meals. Good luck.

OH, I forgot about the hair thing. My hair was very thin and was always falling out and would never grow before I was diagnosed. My hair would only grow about 1 inch over a year. After being gluten free for about 7 months, my hair actually started to grow and became fuller. Now my hair grows 1/2 inch a month. It's great!!! I have cut out all gluten out of my hair products, with the exception of hair color. I just can't live without it!! I started going gray at 24!!!

blueeyedmanda Community Regular
blueeyedmanda
Posted

Before I knew I had celiac my hair was literally falling out in handfuls in the shower and while I brushed it. I kept thinking I was tying it up on my head too tight. Well after always leaving it down and it still happened I began to worry. My sister who has long hair too said don't worry Long hair always falls out...After a few months of gluten free eating my hair grew back and now I falls out at the rate anyone elses does.

jerseyangel Proficient
jerseyangel
Posted
Before I knew I had celiac my hair was literally falling out in handfuls in the shower and while I brushed it. I kept thinking I was tying it up on my head too tight. Well after always leaving it down and it still happened I began to worry. My sister who has long hair too said don't worry Long hair always falls out...After a few months of gluten free eating my hair grew back and now I falls out at the rate anyone elses does.

Mine did this, too. I was also severly anemic (hemiglobin-8). After 4-6 months on the gluten-free diet, my hair stopped falling out and at 6 months my hemi. rose to 14.5. Now, after a year, my hair has completely filled back in and is very healthy looking.

ravenwoodglass Mentor
ravenwoodglass
Posted

Make certain also that your shampoos and soaps are gluten-free. I lost a great deal of hair but it has grown back. The hairloss didn't stop though until I became as rigid about my toiletries as my diet. I also take a gluten-free vitamin that is specific for hair and skin with a lot of the B vitamins. It takes a long time it seems to grow but hopefully you will have your nice full head of hair again.

num1habsfan Rising Star
num1habsfan
Posted

I have the weight problem, too. At first I lost 44 lbs when switching over to gluten-free, somehow managed to gain some back (maybe because for a while I wasnt sticking to the diet??)..I'm now somewhere around 130 lbs, I'm about 5'7" so I'm just about right for my height..

A couple years ago, tho, my dietician seriously suggested I eat extra fat--like using extra butter on everything, etc.

The extra fat is about the only thing that is holding my weight. Since I've been sick again I've been fluctuating between 128-135 lbs, but sometimes its just bloating that adds to me.

Its kinda annoying, but at the same time its kinda cool that I could chow down on bacon and fatty foods while everyone else is trying to avoid them :P

~lisa~

shai76 Explorer
shai76
Posted

Try eating lots of good fats, like olives and salmon and different oils. I don't know what to tell you about the hair. I didn't start losing weight until about amonth before going gluten free, now I am having trouble shedding the rest of my weight. But I did have a problem with my hair falling out. Instead of getting bald spots it would just grow back curlier then ever. It's hard to manage. :/

Maybe, if it's not too expensive, you could see a nutritionist who specializes in weight gain.

mart Contributor
mart
Posted

Try making milk shakes with coconut milk. Just 2 oz. has 12 grams of fat! Also, it doesn't really taste like anything, so it should be easy to mix in with ice-cream and a little condensed milk. I'm going through the same thing with my son. You didn't mention how old you are. When I was in my early 20's I had a lot of trouble gaining weight! Sadly, that's not the case anymore.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      130,407
    • Most Online (within 30 mins)
      7,748
    Ripken
    Newest Member
    Ripken
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Pablohoyasaxa
      Is it common to develop a wheat allergy in addition to Celiac Disease?

      By Pablohoyasaxa · Posted

      I feel your pain. Grain and gluten intolerant. Hang in there. This forum is very helpful
    • ElisaL
      Is it common to develop a wheat allergy in addition to Celiac Disease?

      By ElisaL · Posted

      IDK how common it is but it does happen. I'm celiac, allergic, and intolerant to the fiber in grains. (Fodmaps) So not only do I get sick from cross contamination, also gluten free wheat statch/fiber, and beauty products with wheat will get me. While I don't stop breathing the full body hives and short breath are not fun. Then once I make through that me and the bathroom become reacquaint. Sigh if I didn't feel so much better with the restrictions on my diet I'd feel sorry for myself. Least it makes for some good jokes about how the gremlin that lives in my gut really hates wheat. 
    • Wends
      Ocd making gluten fears unmanageable. Need advice

      By Wends · Posted

      Hi Dora77. “Questions I Need Help With” “1. Is it realistically safe to eat food my mom cooks…” YES - you wouldn’t be here if it wasn’t for your mother. Trust she still knows how to take the best care of you in her own way. Mishaps and cross contamination may happen - will happen on occasion, in fact - that’s life. But for the bulk of it as long as you’re aware of cc and try to avoid it for the most part, don’t sweat the small stuff! See the gluten free diet as a process. Own the process, Do Not let the process own you! “2. Do I need to worry about touching doorknobs, fridge handles, light switches, etc. that family members touched after eating gluten? What about public places like bus handles or school desks? Or like if i went to the gym, I would be touching stuff all the time, so there will be small amounts of gluten and those would get transferred on my phone if I touch my phone while in the gym. But I want to knos if it would be enough to do damage.” NO - this is OCD brain at its best! Hijacking your thoughts and justifying it because of the very real fear of gluten contamination. That’s OCD all over. Like a devil in the driving seat. Fears that are based on some kind of reality are hard to argue with. Boss it back! Recognise this for what it is. OCD using fear of gluten as its excuse to keep you entrapped. Own the OCD in this scenario, don’t let it own you. Normal cleanliness rules apply. Washing your hands before you handle food you’re putting in your mouth is fine. Washing after the gym is normal. Once daily cleansing wipe of your phone etc. Even if you did go rubbing your hands all over surfaces and licking them there might be a trace exposure to gluten possible. But I’m guessing you don’t usually do that sort of thing. Even if you inadvertently were to ingest trace gluten - it won’t be enough to do damage, no. It takes weeks to months of at least a few hundred milligrams of gliadin daily for the innate immune system followed by the adaptive immune system in coeliac disease to kick in and start producing antibodies and cause villous atrophy. “3. Is an endoscopy (without biopsy) enough to tell if my intestines are healed? I’d pay privately if it could help and if i dont get a refferal. Or do i need a biopsy?” Only biopsy, as the gold standard of diagnosis, can tell for certain if villi have recovered. Having said that video capsule etc. can give an indication of any inflammation. “4. Could my job (powder coating, sandblasting, etc.) expose me to gluten or damage my intestines through air/dust?” Assuming your employer provides all necessary PPE - appropriate mask and overalls etc. All you can do is take the precautions that are advised according to risk assessments and regulations of the relevant industry governing bodies? (I don’t know what this would be in the USA. Sorry. But there’s safety and governing regs in the UK for this sort of thing. Assuming it would be very similar over the pond in fairness). “5. Do I need certified gluten-free toothpaste, hand soap, shampoo, or moisturizer? (For example: Vaseline and Colgate don’t contain gluten ingredients but say they can’t guarantee it’s gluten-free.)” This comes down to personal threshold of gluten tolerance. People that are highly sensitive may need certified products. Especially those with dermatitis herpetiformis - the skin manifestation of gluten sensitivity. Listen to your body on this one. “6. Is spices like pepper with “may contain traces of gluten” safe if no gluten ingredients are listed? Or does everything need to be labeled gluten-free?” This one is easy - when following a strict gluten free diet, avoid products that say May contain traces of gluten. But it does not have to be labelled gluten free. There are many foods naturally gluten free. Having said that, there is nuance and personal tolerance threshold. If you’re super sensitive “may contain gluten” labelling is a godsend. But this kind of labelling is more aimed at informing customers with type 1 food hypersensitivity/ allergy reactions. The company is basically legally covering themselves, because there may be a risk of cross contamination. Not to be confused that it means there is cross contamination. In addition to products being labelled gluten free. Many products that are labelled can still contain gluten by the way - in fact any processed products labelled gluten free can still contain the allowable level of gluten (up to 20 parts per million according to Codex). A study was done not too long ago that showed gluten free processed products such as cereals, breads, flours etc. can and some are in fact contaminated and have above the legal allowable amount of gluten in them. While most gluten free products are fine for most celiac patients and tolerated, highly sensitive patients fail to heal fully if relying on processed gluten free products. The trace gluten exposure adds up for someone eating a typical western diet of gluten free cereal for breakfast, gluten free sandwich for lunch, gluten free pasta or pizza for dinner for example day after day, week after week. This is why, at least in the beginning after diagnosis, the gluten free diet should be one of whole real food - food that does not require a label. Meats, oily fish, eggs, beans, natural gluten free complex carbohydrates and vegetables according to custom and taste. Limit fruit as fructose worsens leaky gut and has been hypothetically linked to increased OCD and ADHD - Professor Richard Johnson published study on this recently. “7. Is continuing to only eat my own food the better choice, or could I eventually go back to eating what my mom cooks if she’s careful?” NO and YES. What you listed as your current, limited diet is nutrient poor. Correct it as soon as possible for your own sake and future health! Ditto what others have replied regarding vitamin and minerals that are lacking in malabsorption syndromes like celiacs and need replenishing. Gluten free products are not fortified. You were likely healthier, dare I say it, on a gluten containing diet for this reason. Your brain , and gut for healing and maintenance, needs lots of nourishment from omega 3s, B complex vitamins, folate, B12, iron, selenium etc. Meats, fish, natural fats that come with, do not fear - the brain is made of fat. Limit sugar, seed oils, and high glycemic cereals and fruit like bananas unfortunately as they can cause blood sugar highs and lows that can worsen anxiety in some people. Refined carbohydrates should be limited for the same reason. Fructose and simple sugars in excess feed the unhealthy gut bugs that wreak havoc with anxiety disorders like OCD. White potatoes can be problematic for some, also. It can take six weeks of elimination to see improvements. Note, consult your physician regards insulin adjustment if you reduce carbohydrates in the diet. Dr Bernstein diabetes protocol has worked for thousands. Ketogenic and low carbohydrate diets for mental and neurological conditions have shown improvements. Limited studies have and are being conducted under metabolic psychology and nutritional psychology. In a good proportion of anxiety disorders, mental, and neurological conditions including dementias, the brain is lacking nutrition and usable energy, not a drug. Similar in many autoimmune conditions, including celiacs, the prevailing hypothesis is that gut inflammation and resultant permeability allowing exposure to antigens begets triggering the genetically susceptible immune system response. Modern lifestyle exposure, one of the biggest being the food we choose to eat plays a huge role. Avoid ultra processed products, high in seed oils, refined grains, and sugar. Not just gluten can cause a leaky gut. Fructose, alcohol, egg white lysozyme, emulsifiers, added gums, the list goes on. “8. is cutlery from dishwasher safe if there are stains? Stuff like knives is used for cutting gluten bread or fork for noodles etc. I often see stains which i dont know if it’s gluten or something else but our dish washer doesnt seem to make it completely clean.” If in doubt have your own cutlery set, plate and dishes etc. for your sole use that you handwash yourself. Carry a camping fork/spoon set when out and about if needed. “9. I wash my hands multiple times while preparing food. Do i need to do the same when touching my phone. Like if i touch the fridge handle, I wash my hands then touch the phone. I dont eat while using my phone but i leave it on my bed and pillow and my face could come in contact with where it was.” That’s a classic OCD fear. Nothing to do with gluten as such. OCD brain is using gluten as the excuse here. I personally have the habit of using a cleansing wipe or dust cloth on my phone, nightly, that eases this sort of worry. For example a micro fibre dust cloth will do the trick, keep one on your nightstand? They are antibacterial as particles cling to the cloth. “10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers.”  NO. But again these OCD thoughts are hard to argue with. If in doubt, just a quick wipe with a cloth daily should suffice. Normal cleanliness practice. But if you don’t, or forget, don’t sweat the small stuff. “11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten.” Better if it is gluten free, yes. “12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc.” Still safe if do not explicitly contain gluten grains / derivatives AND if within the use by and use within dates. “I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore.” Really hope these replies to your questions help. Just remember, in the midst of overwhelming thoughts and darkness under OCD clouded vision, the light and sunshine is always shining above. Take a moment or two when you are able in each day - even if it’s last thing at night - to meditate. Focus on something that you enjoy and appreciate. Or sit in a quiet space and try to relax and tune in to your higher self. Ask for guidance and soothing from your guardian angel. Over time it works but don’t worry if your brain is anxious. Eventually it will quieten down some. Try to focus on a real food, nutrient dense and naturally gluten free diet, this will help your anxiety and future health in the long run. Please eat real food - not cornflakes and sandwiches. Eat a steak, eggs or fish for example. Gluten exposures may happen, but don’t sweat it, dust yourself off so to speak, and carry on with a natural gluten free diet as best you can. Own your OCD don’t let it own you! Similarly, when it comes to a gluten free diet for celiac disease, own the process, don’t let it own you! You’re 18. That’s great. I’ve been managing OCD since childhood (in my 40s now. Many years of research, trial and error so to speak. Diet makes a difference. To quote Doc Brown to teenagers Marty and Jennifer, ‘ …your future hasn’t been written yet. No one’s has. It’s whatever you make it. So make it a good one.’
    • maryannlove
      Gluten free thyroid medications

      By maryannlove · Posted

      Unfortunately not going to be able to let you know how Amneal is working because I still have almost 3 month supply of Mylan.  Had annual appointment with endocrinologist last week (though get scripts for blood work more often) and since was on my last refill, she sent new script to pharmacist.  Staying on my Mylan until it's gone.  (I tend to build up a supply because after trying a couple of endocrinologists for my Hashimotos, one finally got my thyroid regulated by my taking only six days a week instead of adjusting the strength which had me constantly up and down.  Will be forever grateful to her.  Apparently high percentage of folks with Celiac also have Hashimotos so all this relevant/helpful on Celiac.com.    
    • KimMS
      Gluten free thyroid medications

      By KimMS · Posted

      Thanks for sharing this! Have you started taking the Amneal? I'm curious how it's going for you. My pharmacy gave me the option of Accord, Macleod or Amneal. I didn't realize that Amneal was formerly Lannett, or I might have chosen that one. However, I did read some anecdotal reports that some people had side effects with Amneal, so I chose Accord. I have been taking it for 3-4 weeks and the past 10 days I have developed extreme fatigue/sluggishness, joint pain and some brain fog. I don't know if it is the new levo med, but nothing else has changed. Has anyone else taken Accord levo? Any issues? It seems to fall into the "no gluten ingredients, but we can't guarantee 100%, but it's likely safe category." I'm wondering if it is worth switching to Amneal or at least getting my thyroid levels checked. If the med is causing my symptoms, I'm guessing it's not because of gluten but maybe the potency is different from Mylan and I need different dosing. Accord was recalled for lower potency, but my pharmacist said the pills I have were not part of that lot.  
×
×
  • Create New...