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

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:
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to Jmartes71's topic in Dermatitis Herpetiformis
      1

      Natural remedies

    2. - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Gluten and short-term memory.

    3. - Scott Adams replied to Suze046's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Reintroduction of Gluten

    4. - Scott Adams replied to Rejoicephd's topic in Coping with Celiac Disease
      2

      Draft gluten-free ciders… can they be trusted ?

    5. - Scott Adams replied to Mykidzz3's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      High Cost of Gluten-Free Foods


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,367
    • Most Online (within 30 mins)
      7,748

    Brianman
    Newest Member
    Brianman
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      While it's always important to approach internal use of essential oils with caution and ideally under the guidance of a qualified professional, your experience highlights the potential of complementary approaches when traditional medicine falls short. Many in the community are also interested in the intersection of natural wellness and gluten-free living, particularly for managing systemic inflammation and its various symptoms, so sharing your story is valuable. Your observation that it may also be helping with bloating is fascinating, as that could point to an overall reduction in inflammation. Thank you for sharing what is working for you!
    • Scott Adams
      It's interesting how a single, clear moment—like struggling during a game—can suddenly connect all the dots and reveal the hidden impact of gluten exposure. Your experience with short-term memory fog is a very real and documented symptom for many individuals with gluten sensitivity, often occurring alongside the other issues you mentioned like mood disturbances, sleep disruption, and digestive irregularity. It's a frustrating and often invisible effect that can make you feel unlike yourself, so that moment of clarity, though born from a tough dominoes match, is actually a powerful piece of self-knowledge. Identifying a specific culprit like that steak strip is a huge win, as it arms you with the information needed to avoid similar pitfalls in the future and protect your cognitive clarity. You are definitely not alone in experiencing this particular set of neurological and physical symptoms; it's a strong reminder of gluten's profound impact on the entire body, not just the digestive system. Supplementation may help you as well.  The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
    • Scott Adams
      Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. What you're describing is a very common and frustrating experience when reintroducing gluten after a period of avoidance, and your timeline is perfectly consistent with a non-celiac gluten sensitivity. While a celiac reaction can be more immediate, a sensitivity reaction is often delayed, sometimes taking several days to manifest as your body's inflammatory response builds up; the fact that your symptoms returned a few days after reintroduction is a strong indicator that gluten is indeed the culprit, not a coincidence. Your doctor's advice to reintroduce it was necessary to confirm the diagnosis, as the initial negative celiac test and subsequent improvement on a gluten-free diet pointed strongly towards sensitivity. Many in this community have gone through this exact same process of elimination and challenging, and it's wise to reintroduce gently as you did. Given your clear reaction, the best course of action is likely to resume a strict gluten-free diet, as managing a sensitivity is the primary way to control those debilitating symptoms and allow your body to heal fully.
    • Scott Adams
      Your suspicion is almost certainly correct, and you are wise to be cautious. Draft cider is a very common and often overlooked source of cross-contact because the same tap lines are frequently used for both beer and cider; unless a bar has a dedicated line for gluten-free beverages, which is rare, the cider will run through tubing that has previously contained gluten-containing beer, contaminating your drink. The fact that you didn't react at a clean brewery suggests they may have had more meticulous practices or separate lines, but this is the exception, not the rule. Many in the community have had identical experiences, leading them to strictly avoid draft cider and opt for bottled or canned versions, which are poured directly from their sealed container and bypass the contaminated tap system entirely. Switching to bottles or cans is the safest strategy, and your plan to do so is a smart move to protect your health. PS - here are some articles on the topic:    
    • Scott Adams
      Your post really highlights the financial and emotional struggle so many families face. You are not alone in feeling frustrated by the high cost of gluten-free specialty items and the frustrating waste when your daughter can't tolerate them. A great place to start is by focusing on naturally gluten-free whole foods that are often more affordable and less processed, like rice, potatoes, beans, lentils, corn, eggs, and frozen fruits and vegetables—these are nutritional powerhouses that can form the basis of her meals. For the specialty items like bread and pasta, see if your local stores carry smaller, single-serving packages or allow returns if a product causes a reaction, as some companies understand this challenge. Regarding vitamins, that is an excellent next step; please ask her doctor to prescribe a high-quality gluten-free multivitamin, as insurance will often cover prescribed vitamins, making them much more affordable. Finally, connecting with a local celiac support group online can be a treasure trove of location-specific advice for finding the best and most affordable products in your area, saving you both time and money on the trial-and-error process. 
×
×
  • Create New...