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April in KC

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

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: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

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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.


Christine

15 year old twins with celiac, diagnosed dec. 2005

11 year old daughter with celiac diagnosed dec 2005

17 year old son with celiac gene

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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

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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

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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.


Christine

15 year old twins with celiac, diagnosed dec. 2005

11 year old daughter with celiac diagnosed dec 2005

17 year old son with celiac gene

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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

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: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

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