Our Story..

[flatoutgallop]

First let me say, We have no diagnosis yet for either children, or myself...so I could be way off base here thinking they have coeliacs - its just another step in our way to finding out whats wrong.

So lets start with me.

My name is Megan (hi..lol) and im 23 years old.

I've always had problems fighting off infections, I have arthritis in one knee, which I have had since I Was 9 years old, and supposed chronic irritable bowel syndrome which was diagnosed at 13 years old.. I get sick at the drop of a hat, and infections take weeks/months to fight off.

When I was 20, I was diagnose with glandular fever, which took months and months to 'get over' but was always a recurring problem.

Then about a month after my glandular fever diagnosis - I got pregnant with my son.

FFWD 9 months. My son was born.

He was 4lb 8oz (2049g) at birth - 37 weeks gestation. He was labelled failure to thrive pretty much right away. We breastfed for 6 weeks, but then he lost 200gm (7oz) in one week, and we were encouraged (read: forced) to supplement wth formula. He was on all sorts of formula, diary, soy, goats milk, hypoallergenic, and script formula - elemental dairy formula and elemental glucose formula.

In the end - he just refused to eat full stop at 4 months old - so he had an NG tube until he was 9 months (so 5 months in total)..and didnt even gain when he was eating solids.

At one year, he was 14lb 2oz (about 6kg?) and now at 20 months, he is only about 18lb (8.5kg)and far FAR below 3rd percentile on any weight chart.

Hes also very short, well below 3rd percentile for age - 74cm tall.

Nothing ever helped him to gain weight. Even with the tube down, and him having 800ml formula a day, he did not gain more than the bare minimum.

He also gets recurring infections that take weeks/months to go away, just like I do.

I got pregnant with DD when DS was 5months old.

FFWD to april this year. DD was born. She was 6lb 12oz (3080g) at 41 weeks. She was also labelled failure to thrive right away. She dropped to 5lb 13oz within 7 days - a bit excessive - despite eating well. We breastefed from day dot, and she fed well. At 2 weeks, she was gaining weight, but only the bare minimum - maybe 2oz (60-70g) a week. At 3 weeks old, she stopped latching on well. Then at 5 weeks, she started completely refusing to feed. The paed refused to test her for anything because her brother went through all the tests and they came back normal. ffwd to 2months and she was just flat refusing to feed - so she was given donor breastmilk for a while, after we tried her on formula, and she reacted pretty badly to it.

We finally got the paed to at least test her for allergies, thryoid and metabolic problems - all came back clear.

A few things happened between, but right now - she is drinking, but very minimally - just enough to stay hydrated and alive really - although she looks a little bit starving african child right now.

Shes on Zantac, which I am assuming has glucose in the flavouring in it to make it palatable for kids, but its not doing any good whatsoever yet.

Over the last month she has dropped nearly 300gm, to go from 3550gm, back to 3250gm, not far from her birthweight.

Anyway, so tonight, I am starting on my gluten-free diet, and will have DS on it as well - and see what happens. If it doesnt make a difference, its back to square one with them both. If it works..then YAY!]

[elle's mom]

Dear Megan,

You wrote:

"Then about a month after my gluten-free diagnosis - I got pregnant with my son. "

and

"Anyway, so tonight, I am starting on my gluten-free diet, and will have DS on it as well - and see what happens. If it doesnt make a difference, its back to square one with them both. If it works..then YAY!]"

If you were diagnosed gluten-free before you got pregnant with your son, were you actually on a gluten-free diet during your pregnancies and while breastfeeding? If not, and you are starting now I commend you for it. Are you still nursing your daughter then? I feel so terrible for your poor babies! I hope they improve, please keep us posted.

I have a question for you; did your gluten-intolerant symptoms (I'm assuming this was your diagnosis rather than celiac) subside during your pregnancy?

I am asking because I have never been diagnosed myself, and have only even thought I may have something wrong with me since really getting into celiac since my dd's diagnosis. I have always been short and skinny-runs in my family, not athletic even though I tried. Also, I've always been quick-tempered, as was my mother and my two sisters-so never thought it was too weird. Sometimes I get instantly what I call "raged" and cannot think straight, I'm constantly fatigued (like I can barely live without a 2 hour nap), and I had a very severe bout with acne at age 23 which was attributed to stress even though I did not feel stressed. The thing I noticed was that my mood improved dramatically during my pregnancy, I was so calm and my acne went away. I think my acne is decreased now just because I'm older (I'm almost 33). But each time after I had a baby (4 times now:) anxiety and acne came back. I just attributed it to different hormones. Well, now that I've been gluten-free for 2 months for dd's breastmilk purposes I have recently felt like my mood and fatigue are so much better. I was tested once for celiac antibodies but had to explain to my OB/GYN what to order-they came back normal.

Recently my son, 2yo, was screened, but his IgA came back low deeming the antibody screening useless. Apparently this is inherited-I'm sure my OBGYN did not check this when I was tested. I'm pretty much diagnosing myself gluten intolerant. My husband and I decided to start a completely gluten-free home just last night. I hope it helps us all. We want to all get gene tests but our insurance won't pay and they are expensive for six people.

Jackie

[flatoutgallop]

Yoink...Im such a dork - I meant to say glandular fever diagnosis - got gluten on the brain :rolleyes: blame the sleepless nights..hehe

I went back and edited.

I think I typed gluten-free (for glandular fever) and its typed it out in full for me, not sure if that was a forum thing, or just my browser..yoink. Sorry!

Your moods sound a bit like miine - can go from zero, happy and easy going - to being a bull with a red flag within seconds..I just thourhg that was my temperament, but maybe not?

And I hear ya on the fatigue - I realise I have 2 young kids, so tired is to be expected, but I can barely get through the day without a nap at some point, even if I get a good 8-10 hours at night.

And yep, Acne has always been a problem for me as well - and yes, it went away both times I was pregnant, and came back right after both pregnancies!

[flatoutgallop]

Ok, I see the problemo now...I typed g...f

[taweavmo3]

I think that could definately be the problem with both of your children.....I have four kids (one who was diagnosed Celiac w/biopsy) who are all gluten intolerant, and I'm on the diet myself.

I didn't go on the gluten free diet until after my last daughter was born, she had some issues at birth and while I was pregnant. When I was 34 weeks pregnant, she was dx'd as failure to thrive. I loaded up on calorie boosting shakes, which helped some. She was born at 40 weeks, and weighed 6lbs. She too dropped quite a bit of weight, and we figured out she also had silent reflux. She was never happy, and cried incessantly. She was on Prevacid, and then I went gluten and dairy free too since I was breastfeeding. That's when I realized I felt better off gluten and dairy too, and have been that way since.

I've kept my youngest, as well as all my children, off gluten and dairy since then. They are just so much happier and healthier on this diet. Incidentally, my parents told me recently that there was a time when I was around 9 months old that I absolutely refused to eat. I'm not sure how it was resolved, but I've had GI issues and anemia my whole life looking back, I just never knew it wasn't normal, lol.

If you do try the diet, give it a good while (6+months) b/c there are so many mistakes made in the beginning. Good luck to you, I hope my ramblings helped a bit!

[elle's mom]

No problem on the typing mistake......we all make them. I am so intrigued to hear someone with a similar story about suspected gluten intolerant symptoms subsiding during pregnancy. I have read somewhere that autoimmune disorders such as arthritis and MS can do this during pregnancy, but I wonder if anyone has ever written about this and celiac/gluten intolerance. My dad always said that my own mother was always "better" being pregnant: there are five of us.

I also realized another very interesting thing while researching/pondering......I've read that approximately 20% of babies are considered to be "colicky". I've also read recently that although only about 1% of the population is probably celiac, it is estimated that 15+% are gluten intolerant. I wonder if there may be a connection. It seems possible based on our observations.

[bethanyh]

It has been several years since anyone posted but I am wondering how everyone's children are doing?   I got pregnant with DS when I was on a gluten-free diet by chance.  (I didn't yet know I had celiac disease) He was born 41 weeks at 5 lbs 14 oz and was basically immediately Failure to thrive.  I gained a hefty 45lbs during pregnancy.  During his first year, we had to supplement to add calories, were always on the verge of a feeding tube, etc.  He is now 4 and only weighs 27lbs and is at least half a head shorter than his peers.  He eats but it is minimal.  We tried to do a blood test when he was younger but they have a terrible time getting blood from him.  I tried gluten free as I thought this would help him but quickly threw in the towel because family wasn't on board and the fight was too exhausting.  (Ex.  His cousins had goldfish and they gave my DS them too.)  

FFWD to now... I was not getting pregnant and after some odd symptoms I had ob and gi run some tests on me.  I found out in the same week I had hypothyroid and celiac.  Shortly after this and gluten free, I was pregnant with DD.  I kept a gluten free diet, gained 21lbs during pregnancy, and had a daughter at 40 weeks 8 lbs 8 oz.  She has been healthy as an ox and is 11 months and 20lbs.  

As we still search for an explanation for my son I can't help but wonder if he has celiac too.  Could my gluten diet and his own possible intolerance or disease be keeping him under 1 percentile on the charts?

Does anyone have any input?

[villi-lover]

bethanyh -- Yes, your son's appetite and growth problems could definitely be due to celiac disease...and the disease does run in families, so his risk is much higher because you have it.  Is your doctor not concerned that he is < 1st percentile ???  I thought anything less than 5th percentile warranted testing to make sure there was not an underlying problem...  Celiac disease is one of the most common causes of slow growth & short stature, along with growth hormone disorders.  You should definitely push for another try on the bloodwork!