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

Interesing Series Of Events...


seastress

Recommended Posts

seastress Newbie

that led me here! Hi! I'm brand new, I do not know if I have celiac disease or not, and i don't even know if I am posting in the correct forum but here goes!

I am 33 years old and for about 10 years now, not every time but just about, I show as anemic on blood tests. Never really thought anything of it. 4 or 5 years ago, I try to donate plasma, only to be told I cannot because my liver enzymes are elevated. I've had numerous blood tests over the last several years and most of them show elevated liver enzymes. Doctor sends blood off for more tests (the usual, hepatitis and so on), all normal. He doesn't seem concerned, not even after 4 years. I start seeing his PA (because he was booked) about weight loss (needing to lose it), a mysteriously fractured foot (nothing unusual, just riding a bike and it fractured) and so on, and after a hernia surgery PA becomes concerned that my liver function tests show elevated enzmyes. Again, I think nothing of it because I had asked the other doctor why that occurs, and he tells me that "sometimes it just does". PA sends me to the lab for a repeated blood test a month ago (and a month after the last) and the results are the same (though I do not know how elevated). He's concerned enough to send me to a GI on the 16th of this month.

I was doing research about this, because i want to know what it is, and I ran across a lot of information about celiac disease. I'm a little shocked because I do have symptoms that grab my attention. I have had strange sores on the top of my head for the longest time: I had them as a kid but they went away and then returned 4 or 5 years ago after the birth of one of my sons (don't remember which, lol, but they are 4 and 5 years old). As a baby, I had eczema. I still get it on occassion but not as bad. My sister has elevated liver enzymes but was never sent to a specialist for it. My mother and sister both have IBS and while I was never diadnosed as having it, I think I do too.

And now...the crazy part. Both of my sons are autistic. My older is high functioning, my younger is mild and only now beginning to echo words. Both have bad eczema. Their doctor always sent them off to the dermatologist and they have medication for that but I always wondered if dairy and wheat played a part in their skin problems. The older I get, the more i cannot tolerate dairy myself.

Who knows...perhaps I am reading more into this than I need to, but it is a strange series of events. Do I mention all of this to the GI, including my son's problems? A lot of people seem to agree that leaky gut and autism are related, and I am not so sure I don't believe that, you know? I bet it does play a role (kids father has autism too, so it's not totally that).

Anyway, thanks for reading this and any information or suggestions you can give I'd be greatful for. In case it matters either, I am over weight, and only became overweight while i was pregnant with my first child. I used to be very thin and nothing really seems to work in taking the weight off.

Thanks!

Jen


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



Celiac.com Sponsor (A8-M):



2kids4me Contributor

There are cookbooks developed specifically for autism - gluten free/casein free. That's how strong the connection is between autism and diet. I am not saying it causes autism but people with autism seem to do better behaviorally and academically on a gluten-free/CF diet.

You are correct to pursue the possibility of celiac. Trying gluten free at the very least with your children may be a wonderful thing. My daughter has Aspergers - and when she was diagnosed celiac and we went gluten free- I cant tell you how marvelous the transformation was ! Teachers stopped me in the hallway to comment on her improved coping skills, her attention and co-operation. Her energy levels soared.

Welcome to the board - there are several families here on the autistic spectrum themselves or have children within the autistic spectrum.

Sandy

Ursa Major Collaborator

He Jen, and welcome to this board. I am one of the people Sandy is referring to, I have Asperger Syndrome and Tourette Syndrome (I finally found out at the age of 50, four years ago!)

Your symptoms all sound a lot like celiac disease. I was as skinny as a stick as a child and teenager. The more my mother tried to fatten me up (with dairy and flour products), the skinnier I got! And I was depressed from a very young age (being abused didn't help), I had no coping skills, and other kids hated me for being different.

When I was pregnant with my first child I started gaining weight. No matter what I tried, I couldn't lose it again. I had four more children and eight miscarriages, meaning I was pregnant or nursing for a long time, and gaining and gaining.

The weight gain finally stopped (and I lost some) after going gluten-free in October of 2005. Now we (my naturopathic doctor and I) are working on getting my adrenal fatigue and thyroid problems under control, which will hopefully result in losing more weight. But, more importantly, in getting some energy back.

I've always had skin problems, too. And angry outbursts (in which I sometimes did things to hurt myself), which have pretty much gone away completely. I used to be severely anemic, too. A lot of people with celiac disease have osteoporosis, because of a deficiency in vitamin D, and as a result, calcium and magnesium (you can't absorb those minerals without vitamin D, and if your villi are damaged, you won't have enough of that).

You have an ignorant doctor! Something should have been done about your elevated liver enzymes and anemia long ago.

For some people, gluten and dairy will cause symptoms that mimic autism. When, on the other hand, the autism is genetic, a gluten-free and dairy free diet often helps, because autistic people have a higher likelihood of being intolerant to those for some reason. And while the diet won't take away the autism, it helps them to function much better. That is what I find.

So, I suggest you get tested for celiac disease. But even if the tests come back negative (which they might if you have a gluten intolerance/sensitivity, but your villi aren't damaged), you should still try the gluten-free diet to see if it helps. And the same goes for your sons and your husband.

I have found that eczema is ALWAYS caused by food intolerances. My oldest daughter has five kids, four of whom get terrible eczema from dairy, soy, and the twins from nightshades (potatoes, tomatoes, peppers, eggplant) as well.

My oldest granddaughter (who will be seven next week) was covered from head to toe in eczema as a baby and toddler. It was so bad that her skin looked and felt like she had scales! Not a pretty sight. And the poor thing would scratch herself bloody (and so did her younger sister, who along with her twin brother is intolerant to nightshades as well as dairy). After she was finally tested for intolerances, and my daughter stopped giving her dairy, soy and the combinations of eggs and grain, and tomato and grain, her skin cleared up within weeks. She has the most gorgeous, clear skin now. And so do the other four.

So, in order to get rid of the eczema, you need to find out what your boys are intolerant to. Dairy and wheat are usually main culprits, but nightshades and soy are suspects as well, and there could be others. An elimination diet is best.

I hope you will finally figure out your problems, and will be able to help your sons as a result as well.

loraleena Contributor

There is much literature out there about the benefits of a gluten/casein free diet for autism. It is worth a shot!

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      My journey is it gluten or fiber?

    2. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      results from 13 day gluten challenge - does this mean I can't have celiac?

    3. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      results from 13 day gluten challenge - does this mean I can't have celiac?

    4. - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      My journey is it gluten or fiber?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748

    Klairep
    Newest Member
    Klairep
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • xxnonamexx
      I don't know if I am getting sufficient Omega Threes. I read about  phosphotidyl choline may cause heart issues. I will have o do further research on heathy Omega 3 supplements or from foods. Is there a blood test that can tell you everything level in your system such as Thiamine, Benfotiamine levels etc? Thanks
    • catnapt
      If lectins were my problem, I would react to wheat germ (the highest source of wheat lectins) and beans. I don't. I only react to bread and pasta, which are the highest sources of gluten. Therefore, my issue is wheat-specific (Gluten/ATIs), not a general lectin issue.   I have eaten a supposedly high lectin diet (I say supposedly because lectin content in these foods is greatly reduced by proper cooking and I eat very few of those foods raw, and even then, rarely!!) for years. My health has improved greatly on my whole foods plant forward diet. I have asked all my drs and a registered dietician about my diet, asked if eating such a high amnt of fiber might interfere with the digestion of any other nutrients and the answer has always been NO.     while doing the gluten challenge I did not eat ANY wheat germ (since it doesn't have hardly any gluten, and I was too sick from the bread and pasta to want to eat much anyway) I will NOT put that poison in my body again. That was a horrific experience and if this is what most celiac patients have to deal with, I am very sorry for them I don't care if I have celiac or NCGS I won't intentionally cause myself that much pain and suffering it's not worth it.  
    • knitty kitty
      @catnapt,  Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract.  They can stimulate IgG antibody production as your blood test shows.   Even beans have lectins.  You've simply eaten too many lectins and irritated your digestive tract.   You may want to allow your digestive tract to rest for a week, then start on gluten in "normal" food, not in concentrated vital wheat gluten. This explains it well: Lectins, agglutinins, and their roles in autoimmune reactivities https://pubmed.ncbi.nlm.nih.gov/25599185/
    • knitty kitty
      I take Now B-1 (100 mg) Thiamine Hydrochloride, and Amazing Formulas L-Tryptophan (1000 mg).   Both are gluten free and free of other allergens.  I've taken them for a long time and haven't had a problem with them. I take Vitamin A from BioTech called "A-25".  It's gluten and allergen free and made in the USA.  It's a powder form of Vitamin A.  I was having trouble digesting fats at one point, but found I tolerated the powder form much better and have stuck with it since.   Tryptophan and Vitamin A help heal the intestines as well as improves skin health.  I get Dermatitis Herpetiformis and eczema flairs when my stomach is upset.  So I'm healing the outside as well as the inside.   I take one 1000 mg Tryptophan before bedtime.   With the Thiamine HCl, take 100 mg to start.  If you don't notice anything, three hours later take another. You can keep increasing your dose in this manner until you do notice improvement.  Remember not to take it in the evening so it won't keep you too energized to sleep. When I first started Thiamine HCl, taking 500 mg to 1000 mg to start was recommended.  If you've been thiamine insufficient for a while, you do notice a big difference.  It's like the start of a NASCAR race: Zoom, Zoom, turn it up!   This scared or made some people uncomfortable, but it's just your body beginning to function properly, like putting new spark plugs in your engine.  I took 1000 mg all at once without food.  It kicked in beautifully, but I got a tummy ache, so take with food.  I added in Thiamine TTFD and Benfotiamine weeks later and felt like I was Formula One racing.  So cool.  You may feel worse for a couple days as your body adjusts to having sufficient thiamine.  Feels sort of like you haven't cranked your engine for a while and it backfires and sputters, but it will settle down and start purring soon enough.  Adjust your dose to what feels right for you, increasing your dose as long as you feel improvement.  You can reach a plateau, so stay there for several days, then try bumping it up again.  If no more improvements happen, you can stay at the plateau amount and experiment with increasing your Thiamine TTFD.  It's like being your own lab rat.  LoL Yes, take one Benfotiamine at breakfast and one at lunch.  Take the B Complex at breakfast. Take the TTFD at breakfast and lunch as well.  I like to take the vitamins at the beginning of meals and the NeuroMag at the end of meals.   You may want to add in some zinc.  I take Thorne Zinc 30 mg at breakfast at the beginning of the meal.   Are you getting sufficient Omega Threes?  Our brains are made up mostly of fat.  Flaxseed oil supplements, sunflower seed oil supplements (or eat the seeds themselves) can improve that.  Cooking with extra virgin olive oil, avocado oil, or coconut oil is also helpful.   @Wheatwacked likes phosphotidyl choline supplements for his Omega Threes.  He's also had dramatic health improvement by supplementing thiamine.  You're doing great!  Thank you for sharing your journey with us.  This path will smooth out.  Keep going!  
    • catnapt
      good luck! vital wheat gluten made me violently ill. I will touch the stuff ever again.  
×
×
  • 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.