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Hair Loss - When Will It Come Back?
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In the last 2 years I've lost about 80% of my hair. No bald patches but thinning terribly and breakage everywhere. I can't wear it down, I fear using an elastic, I only air dry it, I use hot oil treatments and all kinds of leave in conditioners. I was sent to a dermatologist who said that since I don't have bald patches there's nothing she can do for me. My doctor did blood work and it turns out my iron level is at 10. I guess it should be at 40. Anyway, I took supplements for 3 months but my iron only went down...that eventually led to my Celiac Disease diagnosis (amoungst other symptoms). My question is....did anyone else have hair loss issues? If so - did it ever fully grow back??? I'm praying the answer is "yes". Please also let me know how long it took to grow back.

Thanks in advance...

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First, I hope that you're now receiving iron infusions to get your iron level up. Second, yes, I've had the thinning-hair issue. Mine apparently was caused by a combination of thyroid problems, low zinc, low B vitamins, and low silicon. I ended up taking chelated zinc, a fantastic silicon product called "BioSil," and a co-enzyme B complex vitamin. I also corrected my thyroid problem with medication. My hair grew back in thick and shiny--I noticed new growth all over my head after about 3-4 weeks.

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First, I hope that you're now receiving iron infusions to get your iron level up. Second, yes, I've had the thinning-hair issue. Mine apparently was caused by a combination of thyroid problems, low zinc, low B vitamins, and low silicon. I ended up taking chelated zinc, a fantastic silicon product called "BioSil," and a co-enzyme B complex vitamin. I also corrected my thyroid problem with medication. My hair grew back in thick and shiny--I noticed new growth all over my head after about 3-4 weeks.

Thank you! A glimmer of hope! I had my thyroid tested and it's normal. My doctor said she doesn't administer the iron shots. She just wants me to wait until I've been gluten-free for a while and then start taking the supplements again. But it's getting so bad. Everyday I cry getting ready for work. It's terribly embarrassing. I'm going to look up BioSil. But when should I start taking these supplements? How long will it take before my body will start absorbing them?!?

EDIT: p.s. I've only been gluten-free (diagnosed) for 6 days...

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I would take your iron now. It's unlikely that 100% of your intestines can't absorb anything at all. If you are taking the iron, you know that there is always some available for the part of your intestine that can pick it up. Don't take the iron with any calcium - food or vitamin. Also, get some sublingual B 12. You put it under your tongue and it is absorbed thru your " skin". The B 12 helps you utilize the iron.

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I would take your iron now. It's unlikely that 100% of your intestines can't absorb anything at all. If you are taking the iron, you know that there is always some available for the part of your intestine that can pick it up. Don't take the iron with any calcium - food or vitamin. Also, get some sublingual B 12. You put it under your tongue and it is absorbed thru your " skin". The B 12 helps you utilize the iron.

True. Although I wonder why my iron went down after being on the supplements for 3 months? I'm so desperate to feel normal again and have hair, I may just start taking the supplements now. Like you said, it's got to be better than none. Thanks for the tip on B12, I'll have to look for it at the pharmacy. So much to learn.... :unsure:

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In addition to the iron and sublingual B12 also add in a biotin supplement and make sure that anything you are using on your hair is free of gluten. It usually takes at least 3 months to see any noticeable regrowth. I know how disheartening it is to lose so much hair but it should grow back. Do be very strict with the diet though as for some of us the hairloss can be related just as much to the autoimmune issues of celiac as it is to the nutritional problems. I still lose hair whenever I am glutened severely and it takes about a month for the shedding to stop.

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All good suggestions, but I added the B vitamins and Biotin and nothing happened. It was only when I took chelated zinc and BioSil that my hair regrew. It was absolutely emotional for me to see new growth all over my head! I wish this same thing to happen to you...

As for the iron, your doctor does NOT understand that you're unable to absorb iron. Most doctors won't give iron injections, and that's fine. However, it's possible to get iron infusions, and many doctors are unaware of this. Your doctor can order infusions, and if she doesn't know how much to prescribe, she can speak to a doctor or nurse who does know. You receive infusions at the hospital in their infusion clinic--you receive iron through an IV. I was unaware of this procedure until someone advised me on this forum. I was on iron infusions for nearly two years before my body was finally able to absorb iron. Without the infusions, I may have died. Please don't place yourself in harm's way--iron is crucial for good health, and if you're lacking in iron for longer than two years, you can begin to develop cancer because of low cellular respiration. If your doctor refuses to prescribe iron infusions, find another doctor. I'm serious.

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Rosetapper:

What type of thyroid medication did/do you take, and how much biosil are you using?

Thanks,

Karen

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In the last 2 years I've lost about 80% of my hair. No bald patches but thinning terribly and breakage everywhere. I can't wear it down, I fear using an elastic, I only air dry it, I use hot oil treatments and all kinds of leave in conditioners. I was sent to a dermatologist who said that since I don't have bald patches there's nothing she can do for me. My doctor did blood work and it turns out my iron level is at 10. I guess it should be at 40. Anyway, I took supplements for 3 months but my iron only went down...that eventually led to my Celiac Disease diagnosis (amoungst other symptoms). My question is....did anyone else have hair loss issues? If so - did it ever fully grow back??? I'm praying the answer is "yes". Please also let me know how long it took to grow back.

Thanks in advance...

My iron was around 14 at its lowest and alopecia was definitely one of my symptoms. My level is still only about 25 after two years on supplements, but the hair loss was helped by taking iron pills. My hair is much, much better than it was, but is still not back to what it looked like about 5-6 years ago (before all my problems started). I took iron for close to a year before I really started noticing a difference in my hair though... I think it can take awhile.

BTW, some dermatologists who believe that hair loss can be caused by low serum ferritin say you need to get your levels back up to 50-75 to really have optimal hair growth.

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Thank you! A glimmer of hope! I had my thyroid tested and it's normal. My doctor said she doesn't administer the iron shots. She just wants me to wait until I've been gluten-free for a while and then start taking the supplements again. But it's getting so bad. Everyday I cry getting ready for work. It's terribly embarrassing. I'm going to look up BioSil. But when should I start taking these supplements? How long will it take before my body will start absorbing them?!?

EDIT: p.s. I've only been gluten-free (diagnosed) for 6 days...

I am not a doc but I don't understand why she wanted you to wait til you have been on a gluten-free diet to start supplements?? I had hair loss but I didn't wait for doc to tell me what I needed to take for supplements, as I would still be waiting at this point unfortunately. BioSil drops will help a great deal but make sure you get some zinc, B complex, iron and look at Primrose oil. I had a thyroid growth and belonged to a group for people with thyroid issues. The leader lost a whole bunch of hair and contributed Primrose oil for the regrowth. Her hair looks fantastic so it is possible, I've seen it with my own eyes.

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I take Armour Thyroid because I need both T3 and T4, and I take one capsule of BioSil per day. Of course, drops may be better for you, though, since you're currently having absorption problems.

I sure hope you follow through on requesting iron infusions. You seem like a good candidate for them--and shame on your doctor for not being knowledgeable enough to order them for you! All of my doctors at Kaiser had never heard of infusions, but one of them was willing to look into it. He called me soon after and told me that the Infusion Center told him that iron was the most common type of infusion. However, it appears that most doctors never got that memo...

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I've also had thinning hair problems and know how hard it can be to look in the mirror each day to see the damage. My hair dresser recommended taking biotin. When I first started taking it I didn't notice a difference, but after a few months and increasing my dosage, I noticed a big difference.

My doctor also put me on prescription iron supplements. And I switched to gluten-free shampoo and styling products. There are a bunch of threads on here with different recommendations on gluten-free products.

You said your thyroid was tested. Was it a regular TSH test? Or a T3 and T4 test. I read somewhere that you can have a regular TSH test but still have thyroid problems that are only detectable by testing T3 and T4 levels. There are a lot of people on this board way more knowledgable about the thyroid stuff than me, so maybe they can confirm if I speaking correctly about that.

Also, for me my hair got worse on the gluten free diet before it got better. So be patient. It's taken me several months for my hair to look better. At first I was very discouraged, but now I'm seeing progress.

And I'm definitely going to run out and get some BioSil and Primrose Oil to try.

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Okay, so I went out today and bought chelated zinc, BioSil (which was sooooo expensive!!!) and primrose oil (which is a pill). They're all pill form actually - I couldn't find anything in liquid form. So hopefully my system will digest it. It'll be a real waste of money if my system can't absorb this stuff. With tax it was close to $125. So how many pills of each thing should I be taking? Any suggestions?

Zinc Chelazome: I think the pills have 155 mg each (says to take one a day)

BioSil: (instructions say to take 2 a day)

Primrose Oil: 1000 mg softgels (instructions say to take 2-3 a day!?)

I also have GNC Ultra Women's Nourish Hair which contains all B vitamins including biotin. Does anyone know if I'm combining too many things?? :blink:

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Okay, so I went out today and bought chelated zinc, BioSil (which was sooooo expensive!!!) and primrose oil (which is a pill). They're all pill form actually - I couldn't find anything in liquid form. So hopefully my system will digest it. It'll be a real waste of money if my system can't absorb this stuff. With tax it was close to $125. So how many pills of each thing should I be taking? Any suggestions?

Zinc Chelazome: I think the pills have 155 mg each (says to take one a day)

BioSil: (instructions say to take 2 a day)

Primrose Oil: 1000 mg softgels (instructions say to take 2-3 a day!?)

I also have GNC Ultra Women's Nourish Hair which contains all B vitamins including biotin. Does anyone know if I'm combining too many things?? :blink:

You are right on track, and no this is not too much to combine. I think everyone of those products reads on the back that they should be taken with a meal. Do that to help with absorbtion. At first you might notice little change. The first thing I noticed was my hair was falling out. Zinc and Biosil are both good to for other things, I know it's not cheap and you may wonder if it is doing anything. I went off my BioSil to see if it was making a difference and my har started falling out again. I have not used the tablets. The drops taste terrible even in juice so if the tabs work, great! Let us know how it works for you!!

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My immune system is so weak I respond to eggs and dustmites like I have an allergy. (The allergy tests show very, very mild sensitivity, but my body says other wise. Hoping to get well now that I'm focuses on the celiac.) One symptom is hair weakness and thinning. As soon as I cut back my eggs, it goes away.

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@ rosetapper23...

Is it really true that you can get cancer from having low iron stores for over 2 years??? That's very worrying, I was diagnosed (finally after many years) with celiac and a ferritin level of 2.4. I'm in supplements now, it's going up very slowly but this is worrying as I have always been on the low side for ferritin due to being vegetarian.

How high are these cancer/low ferritin risks, do you know?? :(

Ps my hair seems worse after taking iron for some reason, it's so so thin, I can't even look in the mirror... And find it hard to touch it...

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In the last 2 years I've lost about 80% of my hair. No bald patches but thinning terribly and breakage everywhere. I can't wear it down, I fear using an elastic, I only air dry it, I use hot oil treatments and all kinds of leave in conditioners. I was sent to a dermatologist who said that since I don't have bald patches there's nothing she can do for me. My doctor did blood work and it turns out my iron level is at 10. I guess it should be at 40. Anyway, I took supplements for 3 months but my iron only went down...that eventually led to my Celiac Disease diagnosis (amoungst other symptoms). My question is....did anyone else have hair loss issues? If so - did it ever fully grow back??? I'm praying the answer is "yes". Please also let me know how long it took to grow back.

Thanks in advance...

 

I have spent thousands of dollars trying to figure out what is wrong with me because my hair has significantly thinned in the last 6-7 years and I'm only 29. I have also spent countless hours researching why. I found out I was allergic to gluten amongst many other things. I have decided to get tested for celiac's, even though I don't want to undergo a colonoscopy. I am now convinced that gluten is the culprit of my hair loss. My question to you is, did your hair grown back once you became gluten free, about how long did it take and did any of those suggestions work for you? Please HELP!!

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I have spent a lifetime growing (and regrowing) back my hair.  Seems like anything will make  it fall out, including gluten.  But also antibiotics, and anti-rheumatoid drugs like methotrexate,  and now anti-coagulants.  Seems like everything that is anti- something is also anti-hair :lol:   Forrtunately, so far, it always does eventually grow back in, or I would be bald  :wacko:

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I have spent thousands of dollars trying to figure out what is wrong with me because my hair has significantly thinned in the last 6-7 years and I'm only 29. I have also spent countless hours researching why. I found out I was allergic to gluten amongst many other things. I have decided to get tested for celiac's, even though I don't want to undergo a colonoscopy. I am now convinced that gluten is the culprit of my hair loss. My question to you is, did your hair grown back once you became gluten free, about how long did it take and did any of those suggestions work for you? Please HELP!!

 

 

 

Testing for celiac is a blood panel, then an endoscopy with biopsy (not a colonoscopy) if that changes your mind at all. (technically, there is no

gluten allergy--do you mean you are allergic to wheat?)

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I have trouble absorbing my supplements.  I chew tablets and open capsules now!  Maybe you could do this?

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    • After suffering pretty much all year with one illness after another I've finally managed to get a diagnosis and it turns out to be celiac. After my doctors consistently failing to even consider the possibility it might be that (as opposed to "IBS" or "stress") I kept pushing for the Iga TTg test and it was off the charts with a score of >128... may as well fail it in style I guess. So here I am at the start of what feels like the end of my life as I know it. Been doing nothing but reading for the past week and frankly it's terrifying. Here's a few things that are going round in my head and I'd really appreciate your thoughts with. Apologies if it's a bit of an essay  Diagnosis I'm still furious at my doctors for not even entertaining the thought that celiac could be the root cause of all my ills. Given the blood test is so simple it feels almost negligent that they don't run this right at the start to rule it out. Instead I got subjected to poisons like Omeprazole which made me even more ill, whilst being told the physical symptoms were all in my head. Just as well I knew better and kept hitting up Google until my self-diagnosis was proved correct... to think these people get paid highly to be so incompetent makes my blood boil. Does feel good having outwitted the so-called professionals though. Seems 9 months is comparatively quick from symptoms to diagnosis compared to some others that have gone years with the problems so could be worse I guess. Food and diet I'm male vegetarian (non-negotiable) which makes this even harder as so many of my protein sources are now ruled out. Seems many with celiac were having trouble losing weight whereas I'm in the opposite situation. Already lost best part of a stone in the past few weeks and it's becoming noticeable now. The MyFitnessPal app reckons I need 2600 calories a day to maintain \ gain weight - no idea where that's going to come from. On top of that I read sites like Gluten Dude where even the Gluten Free foods are seen as poisons and going on extreme diets like Paleo \ SCD are the only real way forward. Again being veggie makes that practically impossible and if I'm unlucky enough to end up with the dairy issues as well I'm well and truly stuffed. Right now I'm trying the gluten-free Quorn products to see how I go, as well as more eggs etc. Porridge has been my go-to breakfast in the mornings for a while after I cut out bread whilst self-diagnosing but depending on where you read even that's a potential problem (currently using gluten-free porridge oats and seeing how it goes) Seems many gluten-free people have to go right back to basics and cook everything from scratch. That's a problem for me as I'm utterly hopeless on that front and time doesn't permit waiting hours just to prepare one meal. Seems nigh-on impossible to do day-in, day-out. Health Rightly or wrongly right now I see this diagnosis as a death sentence long-term. Looks like it brings other associated illnesses with it and this particular article really scares me: http://scdlifestyle.com/2012/03/the-gluten-free-lie-why-most-celiacs-are-slowly-dying/ I've only really had noticeable symptoms for the past year or so but wonder how long this has been going on for and what damage has already been done. All seems to have started from when I turned 30 (knew I was dreading that age for a reason) and right now I wonder how long I'm going to last before the really bad stuff starts. One of the other illnesses I'd considered as a possibility before getting diagnosed was Hashimoto's Thyroiditis; now it seems that's closely linked with Celiac so may not be out of the woods with that yet either. Just seems to be one big list of illness all triggered from the same point One positive change I've noticed thus far since cutting out gluten is that bloating seems to have gone down and bowel movements are better. Still getting headaches and muscle twitching, which could be as much a withdrawal symptom from gluten as anything else.  Some sites were suggesting stopping exercise whilst withdrawing but I can't face that as it's the only thing keeping me going at present. Again will keep going as-was and see what happens. Then to top it off it sounds like the next step is the biopsy - I'm scared of being put out for the procedure as a member of family went into hospital a few years back for something supposedly routine and never came back out. From what I've been told it's important to have done though as it shows just how broken the villi are so another thing to worry about in the meantime. Social life Seems like despite there being some gluten free options in certain restaurants (granted better now than years ago) I'm going to be hugely limited in food options. Either sitting on the side looking on or just plain not able to go out much anymore. Already had the first hitting-home moment watching colleagues eating pastries that were brought in while I just have to look on... then it dawns that this is never going to get better... urghhh Family life I'm really struggling to accept this lifelong illness and loss of health and it's taking a toll on the people around me at the moment. They won't be going gluten-free so will have to take my chances with the mixed kitchen environment; already gone with split toasters etc. so can't do much more than that. Dating Basically seems game over on that front, unlike many who are diagnosed with understanding partners \ spouses I'm still in the dating game, which is judgemental enough as it is without all the complications that the gluten issues bring. I'm reading even kissing someone with lipstick \ make-up is apparently a big no-no... once any date hears that they won't be coming back... forever alone status confirmed is how it looks right now. Overall feelings I still can't quite figure out if this illness was in me all along and just hasn't flared up enough to notice until now or whether the extreme stress I've been under for the past year or so has triggered it. If the second scenario is correct I can't stop thinking about the events that all led up to this almost year-long bout of ill health and life-changing diagnosis. Can celiac be brought on by stress alone or realistically was I always a ticking timebomb just waiting to be set off? 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    • It sounds like you're doing great. That's amazing that your anxiety has decreased like that. You're obviously doing something really good for your health. With the other things I'm sure they will get better in time. After I gave up gluten I had a bad year but overall it got better. Things like anxiety and insomnia massively improved over time with being gluten free. However, going Paleo (which you are on your way to with the no dairy too) really helped my anxiety, as did running and self-taught acupressure. In particular I found processed gluten free foods were awful for my mood. I know you have to find your own way but I really want to encourage you to see how you feel without that if you haven't already. I also can't afford therapy but when I did have it, that helped too but just being well, gives you the chance to sort your own thoughts and feelings out even without a therapist. Good luck
    • Thank you so much guys. Reading that last response and those from forum members who seemed to be mind-bogglingly sensitive to gluten at times helps me feel like less of a freak  Perhaps worse than the symptoms themselves was my fear that I'm the only person on earth who has gone through this and that if it continues, I will end up with all of my friends and family washing their hands of me because it would look to them like I'm the only one with this and so I must be crazy. It's really good to hear that the sensitivity can go down too. I've been holding onto this idea through the tough times, reminding myself that I also had really bad hayfever for a few years, and asthma at a different time and they both got better.  It has been a whole month since I had a bad reaction to gluten. It has also been two weeks since I even had a small reaction and I'm feeling SO much better. I'm still going to take every precaution I can but this feels worlds away from how it was. At my most risk averse, I had a day on holiday where I only ate bananas and avocados because I could eat them without them having been touched by human hands, even my own! (This was straight after getting sicker and sicker and hunting down what it was that made me ill. I found the refill bottles of soap in the house where I was staying and read that they had wheat in them - not an airborne reaction I imagine but when I washed my hands to prepare food it was probably contaminating my food. Plus because I didn't speak the language, I couldn't be sure the new soap I bought was gluten free.) Now, I am still avoiding environments with lots of gluten and staying clear of grains, but I have reintroduced rice using the food challenge method as directed by my dietician (since I understand that rice is, according to Dr Fasano, the lowest risk of gluten contamination of all the grains) and I am building my weight back up. My Paleo+Fasano diet has been assessed by a registered dietician to include every nutrient and micronutrient that I need so I guess having a really good diet is helping too. My husband has been able to see also that the last time he cooked gluten in the house was the last time I got ill. So it is reassuring for him to see that the sacrifice he is making is making such a difference to me. I also took the advice about new cooking utensils - thanks! I have my fingers crossed for me. I want this better health to continue but right now I'm happy to know that there is a break in the clouds and to know that I can feel like me again. A lot of the steps I have taken to avoid gluten would be seen by some as over the top but I can say that for me, when I introduced these steps, that's when I stopped getting reactions and it's all worth it. Good luck to everyone, sensitive or not, who gets into a bad place with managing their reactions. Hang on in there!        
    • Hello all  I have been living gluten free now for 6 months, as directed by my family doctor after a 6 week elimination diet revealed that I may be celiac or gluten sensitive. I was tested by blood work,  which showed nothing, and am awaiting a specialist to get a biopsy done. I am no where close to getting into see her as it is cased as a non emergency. I have been constantly having bowel problems, rashes all over my body, low iron, weight fluctuations, no energy, depression  and anxiety now for 6 years. Have been a huge nuisance(imo) to my doctor requiring constant antibiotics for this,  creams for this "mystery rash" and either laxatives for constipation that would sometimes go on for over a week to diarrhea that would keep my home- no in between . It hasn't been easy, especially whenever doctors are so quick to blame all symptoms as mental illness. Even though I have continuously told them I feel my issues are something simple...  not a mental illness. Anyways long story short, after going gluten free I have had somewhat Nnormal bowel functions, less rashes around my stomach, been able to cut back drastically on my depression medications and anxiety meds, and energy has taken a huge improvement  which all is great! But .... I am constantly HUngry have gained 20 lbs and can no longer fit into most of my clothes. This is really bothering me because I am afraid I am approaching a weight problem.  At only 5'5" weighing 165lbs is large to begin with. Especially whenever I have two children and have only EVER weighed this much while being pregnant with them. I am 26 years old and just tired of not being myself. I am physically healthy and just would like my body to act it. Any help would be greatly appreciated, as I said I am only 6 months into my journey and have definitely re exposed myself to gluten (accidently) many times in between. Much love. 
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