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

Help For Mom & Baby (suspected Celiac In One Or Both)

April in KC

Recommended Posts

April in KC Apprentice
April in KC
Posted

:o:o

I feel overwhelmed at what I've learned in my online crash course in Celiac and DH over the past two days. I am a 34-year-old mom of three boys. I and two of my sons have health problems that cannot be completely attributed to the handful of diagnoses we have.

I now have or in the past had:

* Itchy clusters of bumps on both elbows (off and on since childhood, sometimes gone for years--currently have)

* Recurrent apthous ulcers, sometimes two or three at a time, usually at same time elbow bumps appear

* Recurrent miscarriages with weird autoimmune symotoms

* Felt like I was "falling apart" before miscarriages, with mouth sores, etc.

* Mild positive antiphospholipid antibodies, mildly elevated sed rate

* Adult-onset cystic acne, treated successfully with Accutane

* Poor night vision (maybe the Accutane)

* Brittle, flaky fingernails (always)

* Small, weak muscles and gross motor deficits (always)

* Mild IBS type symptoms, but also...

* Have been in ER once with pain that was dx as constipation, and...

* Serious urgency to defecate after certain meals (pasta with meat sauce) - have had to abandon full shopping carts to go : )

* Profound difficulty concentrating, although I am considered to be smart...feel like there's something in the way and I have to have total silence to think around it...

* Feeling like I've lost 20 points off my IQ in recent years

* Bumping into things a lot lately

* Feeling like I'm falling apart at times

* Feeling worse with more wheat products in my diet

* No known IgE-type food allergies for myself, but drug allergies and sensitivity to chemical smells

* Maybe not so relevant...some Asperger's "tendencies"

My mother has now or in the past:

* Fibromyalgia

* Neuropathy

* Difficulty concentrating

* Weak muscles, gross motor problems

* IBS symptoms

My oldest son is 6 and has these symptoms (Many not related to Celiac, but some???)

* Life-threatening food allergy to Peanuts

* Copious pale stools or stools that fall apart - off and on since infancy, more on than off

* Anxiety, Sensory issues, giftedness, ADHD symptoms and possibly Asperger's

* Hypotonia - Average height but nonexistent muscles

* Gross motor delays

* Possible sensitivity to food additives, colors, etc.

My youngest son is 8 month and has these symptoms

* Seems to have multiple food allergies and eczema on both sides of his face

* Reacted to Gerber Oatmeal cereal with vomiting and hives (hives suggest iGE allergy, right? does anyone ever get them with Celiac?); but negative skin prick test and negative RAST to Oats, Soy, Egg, Milk

* Reacted to rice with hives, mild positive skin prick test to Rice, but negative RAST

* Low total iGE (possibly due to young age and small exposures at time of first test)

* Currently breastfed on modified elimination diet with bad eczema (have tried weaning to Alimentum - he hates it)

* Wheat is still in our diet...I had it scheduled for elimination next week. We once eliminated all top 8 allergens for 6 days, but I felt bad (withdrawal?) and his symptoms did not clear (but with multiple allergies, his were probably not covered by top 8)

The more things I have eliminated from my diet to try to help my nursing infant, the WORSE I HAVE FELT. I have elminated (at different times and many at present time) egg, milk, soy, peanuts, tree nuts, fish, shellfish, oats, rice, corn. My elbow rash has flared, and my mouth sores have flared, and I have lost weight despite eating a lot of food and taking vitamins. But what have I eaten MORE of as I eliminate the other foods? Wheat crackers, wheat cereal, and pasta! The only thing that throws me off is that I did once eliminate wheat for 6 days, and I thought I felt MORE inflammation in my body. Anyone care to comment if there is a withdrawal from gluten?

I was feeling bad, so I made an appointment with the doctor who diagnosed my antiphospholipid antibodies years ago when I was having miscarriages. He's an allergist, immunologist and rheumatologist.

Q1: Do you think this is the right type of doctor to ask about Celiac? He is quite smart...will he have access to the right tests?

Q2: Do you think from my description above that I have Celiac? Is the elbow rash a slam dunk? It's such a mild symptom, but I've always felt weird about the fact that no one knew what it was and it would come back.

Q3: Should all of my family members be tested if I am positive?

I am continuing to eat wheat until my appointment Monday, as I am hoping the doctor will draw some kind of labs...but I feel guilty as it seems that my infant son is not doing so well on wheat.

Any advice about what to ask for when I see the doc? Are there specific tests that should be run for someone who has the DH rash but does not have major bowel symptoms?

If you've made it this far, thank you!!! :) I love online communities...couldn't live without the one we use for peanut allergy.

Does anyone have experience with a gluten-free, peanut-free, rice-free (possibly milk-free, as I feel better off it) diet? :blink: I have been label reading and cooking a lot already... I suspect that's going to continue.

April

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

Celiac.com Sponsor (A8-M):


chrissy Collaborator
chrissy
Posted

none of the symptoms are a slam-dunk, but it is possible that they could be caused by celiac diseas. i have alot of those symptoms and i don't have celiac disease. it certainly would be a good idea to ask the doctor to run a celiac screen on you and yes, if it is positive you should have all your kids tested. the allergist should be able to have this run for you----an allergist was the first person to run the celiac screen on one of our girls------she does not have any IgE allergies but she was still breaking out in hives off and on------i assume it must have been the celiac causing it.

Generic Apprentice
Generic
Posted

From what I understand the DH after it heals leaves a purpleish spot where the break out was. I found that out from the dermatologist. I thought my daughter had it, but supposedly it was eczema . But then again by the time we were able to get an apt. it was all but gone. She is currently going in for testing.

Alot of those symptoms do sound like celiac or gluten intolerance and it is worth looking into. And yes, alot of people do report withdrawl type symptoms when eliminating gluten and or wheat.

-Laurie

April in KC Apprentice
April in KC
Posted
  • Author

Laurie and Christy, sincere thanks for the replies. I'm sure you're all used to getting inquiries from a lot of people with vague symptoms! It certainly would solve some mysteries here. I will post back once I have some news.

April

chrissy Collaborator
chrissy
Posted

laurie----i have atopic dermatitis which has left me with horrible rashes, bloody skin, cracks, scabs, etc. over the years, but there are no scars. one of my girls has what appears to be DH (no biopsy to prove it) and she has all kinds of purple scars when it clears up.

Generic Apprentice
Generic
Posted

Sounds like DH to me. I never found any info about it leaving purple scars in my research, thats why I mention it. I was told it is about the only thing that would a scar like that after a rash.

-Laurie

buttonburger Rookie
buttonburger
Posted
:o:o

Does anyone have experience with a gluten-free, peanut-free, rice-free (possibly milk-free, as I feel better off it) diet? :blink: I have been label reading and cooking a lot already... I suspect that's going to continue.

April

Hi there

I'm very new to all this... just actually registered with the site today but your post struck a bit of a cord with me as I also have a young son with multiple food allergies. At 4&1/2mths after pretty much permanent gassiness, diarrhoea, passing blood, vomiting, fussy feeding, irritability, refusal to lie flat (or lie down at all really!) etc etc DS had +ive allergy tests to wheat, egg & dairy & had reacted to soya. I tried a strict elimination diet - no dairy, wheat, gluten, soya, nuts, shellfish or soya - in order to continue nursing him... unfortunately he was (and is) a very reactive little baby and after over a week of this he was still as bad and he changed him onto a hypo-allergenic formula (Neocate). This was the only way we had 100% control over what he ate as he was obviosuly still have problems with my diet.

Since starting weaning (hes a year now & its a long slow process believe me) hes reacted to potato, parsnip, apple, oats, corn, & millet and I am now strongly suspicious of celiac disease & plan to request testing when I see the allergy consultant next week.

I had read that this tends to run in families so wasnt at all surprised when I went for allergy testing y/day & came up +ive for wheat & dairy myself (they didnt test for gluten) & now its all falling intoplace with my older DS who is constantly complaining of sore tummy, headaches, has diarrhoea & poor weight gain - I always thought he was just a picky eater but now I'm thinking differently & hope to get him tested too.

Anyway, just wanted to say that even on such a restricted diet its impossible to tell what else your son might react to - unless you do a v strict elimination diet introducing one food at a time (starting with the least allergenic like pear/carrot etc - Dr Sears has a good guideline on his website) & cooking everything from scratch. The problem with this is that you'll need lots of dietary supplements & your diet will provide you with no 'comfort'...

HTH & hope things improve for you & your son...

Take care

Julie

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing

  • 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. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748
    Kristy2026
    Newest Member
    Kristy2026
    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

    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • 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.