Will my hair grow back

[charks]

 

Hi there,

 

For as long as I can remember I have had trouble with bloating. If I’m going out in the evening I usually have to fast all day if I don’t want to look fat. In my late twenties my vision started getting bad. I had to wear glasses when I took my driving test. It got steadily worse until I couldn’t see anything clearly if it was over 10 feet away.

About 10 years ago I started noticing that I had problems walking. It was nothing major. Just a slight unsteadiness when going down steps. I had to always hold onto stair railings. 

Last year I started experiencing intermittent short term memory loss, poor concentration and an inability to focus. It was very distressing. Sometimes I couldn’t even do simple mental mathematics.

About 9 months ago I started experiencing dizziness and a lack of coordination. When I got out of bed I had to steady myself against a wall or I would fall down. My partner was so worried about me falling downstairs that he put in another stair rail. I make jewellery as a hobby and was finding it increasingly hard as I kept dropping things. I was tired all the time. Sometimes I would go back to bed just a few hours after getting up. And I would still have trouble staying awake after 7pm. I was always hungry. I would get up in the middle of the night to have a snack. I must have been eating at least 5000 calories a day. I put on weight but not as much as I should have done.

I just couldn’t be bothered to do anything. Literally. Wash my hair, put on make up, house work - I had no enthusiasm for anything. Well, to tell the truth, I’ve never had any enthusiasm for house work but I always did what was necessary.

Then I started having speech problems, my partner used to get really annoyed because I couldn’t finish a sentence.

Everything came to a head on the 28th April. I had a seizure. My partner found me unconscious and I didn’t come round until after the paramedics arrived. A&E couldn’t find anything wrong with me so I was discharged after 7 hours. Once home I realised the full extent of my problems. I couldn’t stand without help. I didn’t sit down – it was more like falling down. I couldn’t walk properly, I lurched or staggered. Going upstairs I had to hold on to the stair railing and haul myself up. And the worse thing was my fuzzy head. I just couldn’t think clearly. It was like I was permanently drunk.

I was really shook up and I realised that I had to adopt a healthy lifestyle or else. I overheard one of the nurses in A&E saying that I had high levels of blood sugar so I assumed that I must have type 2 diabetes. So I went on a drastic diet and cut out all bread and cakes. My bloated stomach and indigestion vanished within a day. On the fourth day of the diet I woke up and found that I could think clearly again. I felt like my IQ had risen by 20 points. I still struggled to get out of bed but I could now do it without any help. And, best of all, I now had normal vision.

I couldn’t understand what was going on so I decided to carry out some research on the ‘net. I stumbled across this site and everything started to make sense. Since giving up gluten all my health problems are slowly resolving themselves. I have lost over 30 pounds in weight. My speech is back to normal and I am able to think clearly. I still have trouble with my balance and walking but it’s getting better every day. But I appear to have become incredibly gluten sensitive. I made some tortillas out of chickpea flour and tapioca flour. I assumed that they would be safe but as soon as I ate one I realised that there must have been gluten in it. Within 30 minutes my mind became foggy, my eyesight blurred , I started losing my sense of balance and became extremely tired.

 

I had no support from my doctor so I changed to another one. He gave me a celiac blood test but it was negative – at this point I hadn’t eaten any gluten for over 6 weeks. There is no way that I am going to eat gluten ever again!!!!!

 

Looking back I can’t understand why I didn’t go to the doctors. My partner kept telling me that something was wrong with me. But I just couldn’t be bothered. I am over 60 and kept thinking my symptoms were age related. It’s ironic really. I’ve always been one of those people who thought that gluten intolerance is a modern ‘made up’ disease. But since giving up gluten I feel really great – better than I have for years. Apart from being constipated. I didn't go for 3 weeks after giving up gluten. And I'm still not regular. 

It’s been over 6 months since I’ve stopped eating gluten. I’ve been very strict. I cook all my food from scratch and never eat out. Following advice on this site I take vitamin b12, B1, k2 and d3. I also take calcium and zinc. But I’m still slightly unsteady on my feet and my hair is still falling out. And I’m still losing weight slowly. About a pound a month. I don’t eat dairy or sugar and have reversed my diabetes by cutting down on carbs. And I exercise for over an hour a day. Is this weight loss anything to worry about? I know another celiac who eats constantly to make sure she maintains weight. Is this a celiac thing? I’m not too worried about my weight as my BMI is still healthy But I am worried about my hair.

 

I look forward to any advice you can give me

 

 

 

 

[trents]

There is a good chance your hair loss was likely related to vitamin deficiencies but there could also be hormonal and genetic issues involved. I'm not sure anyone can tell you whether or not your hair will grow back. Have you considered Rogaine (generic is monoxidil) therapy or laser hat therapy. They do work and have enabled my wife to reverse a good bit of her hair loss - not all of it but definitely an improvement.

Concerning weight issues, some Celiac Disease can result in obesity or cachexia (being unhealthily too thin). It depends on the individual.

Concerning your constipation issues, what are you doing to counteract that? Are you getting plenty of fiber in your diet and have you tried fiber-based laxatives such as psyllium powerder (e.g. Metamucil)? Are you getting plenty of liquids daily?

Edited December 6, 2020 by trents

[GFinDC]

Welcome to the forum Charks!

I guess now you know why your mom told you to eat your veggies!

One of the bad side affects of gut damage is not absorbing nutrients properly.  You might want to have your blood levels of vitamins and minerals checked by a doctor or lab.  The vitamins you are taking are good, but there are also a few minerals to consider.  Boron and selenium, iron and copper and magnesium and calcium are some of the important minerals.  Some of these are trace minerals only so you don't want to over do it.

It can take months at low levels to replenish some of these.  Vitamin D works better as a daily dose rather than a weekly mega dose IMHO.  You can also get vitamin D from oily fish like salmon, tuna, mackeral, and sardines.  Selenium is found in brazil nuts.

Your celiac friend may not have healed well or she is newly diagnosed.  It seems people new to the gluten-free diet can have a strong appetite for a while.  But gut healing should happen within a couple years.  Or your friend needs to get her vitamin/mineral levels checked too.  Deficiencies can cause appetite also including some unusual cravings at times.

It sounds like your diet is good.  Yes, sensitivity to gluten seems to increase after going gluten-free.

 

 

[Haveaniceday]

Your symptoms, the unsteadiness, vision problems, memory problems etc etc, I had for about a year getting increasingly worse. I eventually had digestive upset that was like an unending tummy bug which is what I presented to my doctor with after three weeks of it. Celiac damage was marsh 3b. All that intestinal damage with only neurological symptoms for years. Despite being gluten free for two months I still have those same symptoms

[charks]

Thanks for your reply GFinDC. 

The doctor did check my b12 levels, it was 340 but I was taking b12 supplements.

My sodium level was normal and my blood pressure is 126/75. I was amazed at this because I have always craved salt - I eat it neat like it was sugar. So I guess that my gut isn't absorbing salt like it should which is why I crave it. Makes me think that there is some truth in the old sayings such as listen to your body.  

I hate fish but I do take d3 every day. Luckily I love brazil nuts. I've been cutting down on vegetables because I've read that fibre is very hard for the gut to digest especially if the villi are worn down. I try to eat food that is easy to digest.     

My friend has been a celiac for over 30 years but she is a vegetarian so maybe that's her problem. At the moment I seem to be able to eat an incredible amount without putting on weight. Which makes me think that my gut still hasn't healed after 6 months. But I've cut most fattening things out my diet so maybe that is the reason. I just worry that I'm still not getting enough nutrients to encourage new hair growth. I have a couple of bald spots but my hair still looks OK. But if this carries on for a few years I will be in trouble.

I hate to sound smug but I'm not finding being a celiac too difficult ( apart from missing cakes, sugar, bread, pasta and cheese ). Not eating out is a problem and I refuse to shop in M&S or Waitrose because it's too much temptation. I think it helps that I love cooking and experimenting with food. The worse thing was that I had to give up my catering business - I used to bake all my own bread - but my health comes first. And it helps that my partner is incredibly supportive. We are a gluten free household. And, best of all, I can still drink wine!!      

 

[cristiana]

Hello Charks

There's a lot of debate on line about anemia and thinning hair.  I don't know what other contributors think or whether they have personally experienced of any link with iron levels, but having read your posts (sorry if I have missed something) I can't see that you have had a test for iron.  Might be worth doing.  Don't supplement without your doctor's say so as too much iron is dangerous, and something that needs to be monitored.

Also I gather thyroid issues may be worth looking at.

BTW, well done for resisting Waitrose and M&S.  Maybe that's where I'm going wrong!

Cristiana 

[DJFL77I]

11 hours ago, Haveaniceday said:

. Despite being gluten free for two months I still have those same symptoms

2 months is not long enough..

check back in 6 months

[charks]

11 hours ago, cristiana said:

Thanks Christina, 

I see from your other posts that you talk a great deal of sense.

My thyroid levels are normal. I'm reluctant to ask my GP for an iron test as I'm not sure he believes that I am a celiac - my tests were negative. But I'm not willing to go back on gluten to prove it - I believe that everytime I eat gluten more of my brain cells are being damaged, it's just not worth it. Are the iron tests you can buy on the 'net reliable?   

Charlotte. 

 

[cristiana]

Hi Charlotte

I am not sure about iron tests outside the NHS.   However, one avenue worth exploring may be attending an accredited nutritionalist - we have a very highly qualified one living in our area and she did an additional blood test for me and found my D levels were far from ideal, something the NHS had overlooked.  She copied my GP in on the results.  I think they were glad to have the additional support as our surgeries are so stretched.  My GP could only give me a 10 minute appointment, whereas my nutritionalist gave me an hour!

Of course the other option is just to put in a call to your GP and say you are feeling tired and could they test your iron  - they shouldn't refuse you a ferritin test on those grounds.  You don't even need to mention coeliac.

If your doctor is referring to your old tests and tells you your haemaglobin levels are normal, so s/he doesn't suspect you are low on iron, it is important to know that you can be iron deficient and have normal haemoglobin.  Strangely enough I have this issue.  So it is still worth asking for an iron test, even if you have normal haemaglobin.

Cristiana

 

 

[trents]

I would be careful of with cutting out too much fat from your diet. Some vitamins are fat soluble. And if you are eating a low fiber diet that will contribute to constipation.

[charks]

1 hour ago, trents said:

I would be careful of with cutting out too much fat from your diet. Some vitamins are fat soluble. And if you are eating a low fiber diet that will contribute to constipation.

Trent

I have cut out dairy but not fat. Actually I have increased my fat intake and decreased carbs as I am also type 2 diabetic. When I was eating more fiber I had really bad constipation - I never went more than once a week. Now I have cut down on fiber and increased my fat intake I have 2 to 3 bowel movement per week. 

Christine

I have normal haemaglobin. But I will follow your advice and ask for an iron test. I really don't want to have to wear a wig. Although, when I have a bad hair day, it would be much easier. 

Charlotte. 

  

 

 

 

Charlotte 

[Scott Adams]

Here are some article about gluten ataxia, which is the neurological manifestation of celiac disease, and is consistent with what you've described:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/ataxia-nerve-disease-neuropathy-brain-damage-and-celiac-disease/ 

Here are some article on hair loss:

https://www.celiac.com/search/?&q=hair loss&type=cms_records2&search_and_or=and 

[charks]

13 hours ago, Scott Adams said:

Here are some article about gluten ataxia, which is the neurological manifestation of celiac disease, and is consistent with what you've described:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/ataxia-nerve-disease-neuropathy-brain-damage-and-celiac-disease/ 

Here are some article on hair loss:

https://www.celiac.com/search/?&q=hair loss&type=cms_records2&search_and_or=and 

Thanks Trent,

I was feeling bored today so you've given me something to do. I love research. Some of the articles I've already read have given me more food for thought.

Re gluten ataxia. I originally had no gut problems ( apart from bloated stomach and terrible indigestion at night ) so I assumed that I had gluten axaxia. But since I diagnosed myself ( UK doctors are useless ) I seem to be developing gut issues as well. I lost weight very rapidly ( which was nice ) and I became very constipated ( not so nice ).  I have never been constipated in my life and I am over 60.  I didn't have a bowel movement for over 3 weeks. I used OTC  treatment which didn't work and finally, in desperation, asked my GP for help. He gave me a laxative which must have contained gluten so I couldn't use it. When I finally went I have never been so relieved (literally) in my life. I am now a very healthy weight and, because I am exercising every day, have never felt so good. But slightly worried about my continuing weight loss. 

Do you think the stress caused by my seizure in April brought on the more classic celiac disease symptoms? 

Charlotte

 

 

 

[cristiana]

Charlotte

Sorry, I think your question was directed at Trents but I thought I'd chime in too!  Just to say that my most troubling symptom prior to diagnosis was severe anxiety of the likes I have never known before - my mind would not stop racing, coupled with really disturbing thoughts - plus worsening tingling, twitching and numbness which had been building for some time before.

And that all came before my gastric symptoms.  The gastric symptoms were the last to hit.   This happened in my mid-forties and I can recall my mother saying that she thought it was stress that had caused it.  I didn't want to admit it at the time (poor Mum!)  but I think she was probably right - I had a huge project hanging over my head the summer of 2012 and it was one of those really stressful projects with deadlines and I wasn't holding any of it up - it was the other people involved. 

Looking back there were warning signs since my childhood - a very particular headache between my eyes (that interestingly came back during my gluten challenge, when I made the most of eating Weetabix and Chocolate Penguin Biscuits for the last time!), a very nervous stomach, a couple of bouts of stomatitis in my late thirties which the doctors never looked into, visual disturbances on waking - no cause ever found, despite MRIs.   But it seems to me, looking back at 2012, the events of that summer were the proverbial straw that broke the camel's back.   

When I went to my GP I had high protein in my blood and anemia.  The numbers went back to near normal on a subsequent test (I'd modified my diet, funnily enough, eating less gluten than normal because an acquaintance said it might help!) and didn't think this was relevant so didn't mention it to my GP.  I knew nothing about coeliac disease.   It wasn't until the gastric symptoms really stepped up six months later that another GP knew what to look for.   The one thing I think the doctors should have looked into was the stomatitis.  Having a mouth full so full of ulcers I felt like I was eating glass surely must have been a clue, but I guess it could have meant other things.  

Here's a link to stress possibly triggering coeliac disease.

https://www.mayoclinic.org/diseases-conditions/celiac-disease/symptoms-causes/syc-20352220#:~:text=Sometimes celiac disease becomes active,that line the small intestine.

Re: your weight, it sounds like you have really turned your diet around and lifestyle so I would expect one pound a month is normal?  How much have you lost overall?  I lost about a stone and a half over a few months but I am ashamed to say it's crept back on over time.  I don't stay away from M&S and Waitrose although I am trying to at the moment.  The gluten-free mince pies are an almost irresistible force!

Cristiana

[charks]

Hi Christina

It's so easy to be wise after the event!

I too have always had mysterious symptoms all my life. Fainting fits in my late teens and twenties, always bloated stomach, problems with balance all my life - I just assumed I was clumsy, very bad teeth etc etc. 

Just before my seizure I went through a very stressful time. I also started experiencing the same type of mental problems that you described.  My mother was diagnosed as a maniac depressive in her 30's which was later amended to MDD and spent many years in psychiatric hospitals. The only treatment that worked was electroconvulsive therapy  She also had a bloated stomach. My partner said she looked like she'd swallowed a beach ball. I was really worried that I would end up like my mother.

I also became very irritable and bad tempered. My mother was the same. When I was young it was like living with a volcano. So nice one minute and then so nasty. I think this is why, after her first major period of depression, she was diagnosed as bipolar. But her mood swings were too extreme and happened to quickly to be true bipolar. Hence the reclassification as MDD.    

Within 2 weeks of giving up gluten I was back to normal. To the relief of my long suffering partner. I honestly don't know how he put up with all the abuse. He kept asking me to go to the doctors but I refused. I know it sounds silly but I was so scared that the doctor would want to admit me to the 'loony bin' and I would be forced to have ECT. 

Now he keeps telling me that I should have listened to him gone to the doctors like he said. I would have been diagnosed sooner and maybe my hair loss wouldn't be so bad. I think he is wrong. We have agreed to differ. What do you think?  

Charlotte 

 

[charks]

P.S. Re staying away from mince pies etc, I am diabetic and have read all the research linking diabetes and dementia. And the link between sugar and cancer. And the fact that some of the top cancer specialists don't eat sugar. I now think of sugar as poison. So I find it quite easy to say no.   

[cristiana]

Charlotte

As you say... wise after the event!  And you also mention another symptom I had - fainting!  I'd forgotten that one.

I too was worried about going to the doctor about my anxiety.  I did go eventually, but I wish I'd gone sooner.  While I was ill like this, physically and mentally, I actually looked unwell so people were asking me how I was all the time.   My husband was travelling at the time, and the children were still quite young, so  I decided that instead of trying to keep a stiff upper lip, I'd be open about it, as I needed support and I found that support - people were incredible. And what I found astounding was just how many people had been through mental health issues and health problems and were openly sharing things with me that I would never have thought anyone would share at the school gate!

I am grateful also that three good books came my way - At Last A Life, by Paul David; The Depression Cure, by Steve Llardi, and also Depressive Illness,The Curse of the Strong, by Dr Tim Cantopher.  The first probably addressed the anxiety issue most effectively, but the two other books helped tremendously. 

Regarding hair growth, it's complicated because as I think someone else has said, it can be to do with genetics and other things.  My hair has always been thin and when my iron is lower just gets thinner.  My hairdresser says it varies between haircuts, sometimes better, sometimes worse. She says it looks as if I have thyroid problems but despite numerous tests it isn't that. My gastro. thinks it is iron deficiency, but he doesn't want me to take it because of my high normal haemoglobin.  My nutritionalist says she knows a few coeliacs with hair like mine.  So what to believe?  I hoped that I'd have thick hair one day but that isn't going to happen.  But in your case, if you have always had good hair before, it could well be temporary?

[trents]

Stress can trigger the onset of latent celiac disease but I don't know that it would make it worse in those who have already developed celiac disease. But, on the other hand, stress makes most things worse and digestive/gut issues caused by stress are common and might be difficult to separate from celiac symptoms.

Edited December 8, 2020 by trents

[GFinDC]

Hi Charks,

Labdoor is a site that lists info on various vitamin pills.  You might find some helpful info on there.  One thing they check is the actual amount contained vs what the label lists.  The reason I think it's good for you to review is some vitamin D pills are not really very good in that regard.  They aren't all the same.

https://labdoor.com/rankings/multivitamins

[charks]

Many thanks to all who have replied to my question and tried to help.

Reading Christine's last post I think I am doomed. My case is so similar to hers. I have always had fine/thin hair like her and my hairdresser says the same sort of thing. I am trying biotin as a last ditch effort. It can't make things worse. 

One thing that strikes me is how time consuming managing celiac disease is. I think that I am 'lucky' that celiac disease has forced me to retire early. As there is no drug that can cure it, and the average doctor doesn't seem to know much about it, newly diagnosed celiacs have to reply on websites like this for help. As I am a speed reader and love nothing more than researching things ( I won't buy anything without making sure it is the best ) it was second nature to me to read all I could to help myself. But even though I am a speed reader it has taken me many hours to try and work out my personal treatment plan. I'm not sure I would have had the time if I was still working.

And what to eat is so time consuming as well. I seem to spend all my time planning and cooking. My partner has been totally supportive and gave up gluten, dairy and processed foods straight away so I wouldn't be tempted. But it is so hard to make delicious meals without gluten and dairy ( it doesn't help that I am a very picky eater, no fish, onions or garlic ). I just don't know how busy mum's cope. 

And I'm really scared what will happen if I need to go into a care home. Most care homes don't have gluten free options. 

Sorry if I've ranted on a bit but it's so nice to talk to people who understand what I'm going through.

P.S I still wonder if my mum had celiac disease not major depression. She did love bread. 

 

 

 

[trents]

Be aware that kissing someone who has recently consumed gluten can be a source of cross contamination. For very sensitive celiacs that could be an issue.

[Scott Adams]

26 minutes ago, charks said:

P.S I still wonder if my mum had celiac disease not major depression. She did love bread. 

 

Among first degree relatives who are female studies have shown that the odds of your mother also having it are over 44%. All first-degree relatives of celiacs should also be screened, even if they don't have symptoms.

[cristiana]

22 minutes ago, Scott Adams said:

Among first degree relatives who are female studies have shown that the odds of your mother also having it are over 44%. All first-degree relatives of celiacs should also be screened, even if they don't have symptoms.

Wow Scott, that is an astounding statistic!  I had no idea.  My mother had osteoporosis and was a very anxious type.  But of the generation where you "just got on with it" as we like to say here in the UK.  I told my parents to get tested when I was tested but nothing came of it.   

[Scott Adams]

If you want to look more at the recent study, it is from the Mayo clinic:

 

[cristiana]

I completely missed that one.  I just wish I'd insisted my mother had been tested.  Thanks so much for sharing.