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Not So Hairy Situation...

L.A.

By L.A.
in Coping with Celiac Disease

Recommended Posts

L.A. Contributor
L.A.
Posted

Does anyone have some advice for me? I have been gluten-free for 4 years. I've had my hormone levels checked and they're fine. My calcium, iron (I'm on iron supplements for anemia), thyroid have been checked and are also fine...so why is my hair failing out?

I use gluten-free shampoo and do not seem to have any other food issues.

Also, having a hard time putting on wieght--is this normal? :unsure:

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Guest Viola
Guest Viola
Posted

Check your B12 levels ... that's frequently a major reason for hair loss :(

Hope it gets better soon.

L.A. Contributor
L.A.
Posted
  • Author
Check your B12 levels ... that's frequently a major reason for hair loss :(

Hope it gets better soon.

Ooops, forgot to mention...B12's are good too. :rolleyes:

CarlaB Enthusiast
CarlaB
Posted

Are you a man or woman :)

L.A. Contributor
L.A.
Posted
  • Author
Are you a man or woman :)

LOL, a female :)

CarlaB Enthusiast
CarlaB
Posted

I think that having a hard time putting on weight is normal. I certainly have trouble with it.

As for the hair, I really don't know. I'm having a hair analysis done to see what my mineral levels are. I'm doing it through my doctor who also practices alternative medicine. I've read about a lab in a book I'm reading (Tired of Being Tired -- great book), www.gsdl.com. I have not been to the website, but this is the place the author of the book, who is an MD, recommends. I don't know if a mineral analysis woult tell you more or not.

L.A. Contributor
L.A.
Posted
  • Author
I think that having a hard time putting on weight is normal. I certainly have trouble with it.

As for the hair, I really don't know. I'm having a hair analysis done to see what my mineral levels are. I'm doing it through my doctor who also practices alternative medicine. I've read about a lab in a book I'm reading (Tired of Being Tired -- great book), www.gsdl.com. I have not been to the website, but this is the place the author of the book, who is an MD, recommends. I don't know if a mineral analysis woult tell you more or not.

I did some research and found that Saw Palmetto oil extract is supposedly good for the scalp and hair loss so am trying that--started yesterday. About the weight thing, why is it so hard to put in on--I'm 5'2" and weight 99 lbs. Prior to my celiac diagnosis I was 110 lbs...

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daffadilly Apprentice
daffadilly
Posted

Even if your B12 levels are okay, you need to take a B12 everyday.

CarlaB Enthusiast
CarlaB
Posted
Even if your B12 levels are okay, you need to take a B12 everyday.
Why?
lorka150 Collaborator
lorka150
Posted

Are you [sure that you are] eating a balanced diet of proteins/carbohydrates/good fats?

L.A. Contributor
L.A.
Posted
  • Author
Are you [sure that you are] eating a balanced diet of proteins/carbohydrates/good fats?

I try to eat well balance meals--I am also a diabetic, so my meals are geared to that as well.

emcmaster Collaborator
emcmaster
Posted

Do you have the lab results for your thyroid tests? Doctors notoriously fail to treat patients that have very high, yet still in the normal range, TSH levels. If yours are high, you are probably experiencing the same symptoms that someone actually out of the normal range might be experiencing. Hair loss is a big symptom.

lorka150 Collaborator
lorka150
Posted
I try to eat well balance meals--I am also a diabetic, so my meals are geared to that as well.

Okay! :)

Just making sure, as malnourishment of any sort can be a catalyst in that. As a diabetic (you, not me) I am sure you are extremely aware of your intake! I hope you figure it out.

L.A. Contributor
L.A.
Posted
  • Author
Do you have the lab results for your thyroid tests? Doctors notoriously fail to treat patients that have very high, yet still in the normal range, TSH levels. If yours are high, you are probably experiencing the same symptoms that someone actually out of the normal range might be experiencing. Hair loss is a big symptom.

I just called and made an appointment to go see the Doc and go over all my results--thanks! :)

All-about-March Newbie
All-about-March
Posted

What about any medications you may be on? Some medications list alopecia as a side effect (usu. reversible). I know that one medication I'm on is the culprit for my hair loss!

L.A. Contributor
L.A.
Posted
  • Author
What about any medications you may be on? Some medications list alopecia as a side effect (usu. reversible). I know that one medication I'm on is the culprit for my hair loss!

I'm not on any new meds and this is a fairly new problem. Real frustrating--but thanks for the ideas :)

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      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
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    • rei.b
      High DGP-A with normal IGA

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      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
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      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
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      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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