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Gluten Possibility For 3 In Family


7blessings001

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7blessings001 Newbie

Hey Ladies,

I was wondering if any of you can give me some insight as to whether we are looking at a possible gluten intolerance with my kids and hubby.

First off, my 5 year old son is developmentally delayed, slow growth, had the diagnosis of failure to thrive, has periods of constipation and sometimes when he does go it is like pebbles. When he was a baby he had severe gastric reflux. We've struggled with this since he was born. He did have an endoscopy when he was around 18 months and they did a biopsy but it came back normal. I read that test under the age of 2 aren't accurate. He also is low muscle tone. He is very hyperactive with no attention span. He is still really short for his age. He is 5 and his 3yo sister is as big as he is.

My 3yo daughter is low muscle tone. She is constipated all the time. She will have a distended belly that makes her look pregnant sometimes it is so bad. When she finally does go to the bathroom her belly goes down with it only to repeat the cycle again. She is also delayed in several areas although growth wise she seems to do fine. She is always congested. Both of them have had eczema before. She also slept way more than normal all the way up to about 2 1/2 years old. She was the only child we have that would crash on the floor 2-3 times a day and sleep. She isn't so bad now but sometimes she still finds a place and goes to sleep on her own. She too is developmentally behind.

My husband is struggling with severe fatigue. Has pain in his joints and complains of always have mucous in the back of his throat. He has been struggling with trying to lose weight and will have big fluctuations of weight. He too struggles with constipation and intestinal problems. He too has eczema. He has no energy at all. Sometimes he seems to develop mood swings although he would probably deny this.

Anyways, I would appreciate your thoughts on this. Also any tips on how we can go about eliminating the foods and change our lifestyles would be appreciated. My hubby wants to clean out the pantry and take it to the food bank and just start over.

Stacy


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Mom23boys Contributor

It is quite possible there are several in the family. We have 1 wheat allergic and 4 wheat sensitive (slow response "allergy") with possible celiac in the family history. The person reading our panel said since our patterns were similar there is a definite DNA link. One of the kids has to go in for blood testing so we are having them draw for a couple others to check on this link.

Since we were switching over the whole family, we went with the naturally gluten-free foods first instead of trying to replace everything ($$$).

raea2002 Apprentice

I say it's not going to hurt to try it. That's what I did when we went gluten free, I gave away all the bad food, and started with only approved. When we figured out who is sensitive and who isn't I've added luten foods back in the house but my husband knows where his food is and I label what's gluten free so he knows what the kids can have. It's very pricey to o that but you won't have any accidents that way. I would recommend a grocery guide book that you can buy on the gluten free mall. It has helped me. Good luck.

Cara in Boston Enthusiast

Get everyone tested (even kids with no symptoms) BEFORE you make any changes in diet. The symptoms certainly sound like they could be related to celiac and since several in the family have symptoms, it seems even more likely.

Once you finish the blood tests, if anyone is positive, the next step is endoscopy. I would pursue testing as far as possible with the kids - unless your doctor is willing to give you a diagnosis based on blood tests/symptoms/reaction to diet. You will want a firm diagnosis going forward - for the kids, you need one so that schools, camps, etc. will comply with the diet.

After you have done all the testing you want (and you may choose not to have the endoscopy) REGARDLESS OF THE RESULTS, you should give the gluten-free diet a try. Set a time goal (1-3 months) and track symptoms so you can see results (just write notes on a calendar about how everyone is feeling) .

If you have people still eating gluten at home (we do) be sure to have separate (duplicate) jars of peanutbutter, jelly, butter, cream cheese, etc. so you don't cross-contaminate the gluten-free people.

Cara

MitziG Enthusiast

I concur with the above posters- TEST FIRST. Then, regardless of results, give gluten-free a fair trial period.

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    • lizzie42
      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
    • trents
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    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
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