Celiac? Gluten Intolerance? Seems like something is going on here...help! - Mothering Forums

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Old 10-13-2013, 03:25 PM - Thread Starter
 
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I am thinking more and more that wheat is the enemy in this house. Sorry this is long but trying to give the whole picture and would love some advice/feedback.

 

I had no issues with wheat at all that I am aware of until my 4th baby was born and was milk and wheat intolerant through breastmilk. I was GFDF for 15 months and then he seemed to outgrow it as far as GI symptoms. I however, started to have trouble with it. The first week I introduced it, I had a headache almost the whole time. I started gaining weight rapidly. I had issues with dairy as well. My oldest three kids from my first marriage are mildly on the autism spectrum and I have read that undiagnosed celiac in mom can contribute to the development of autism in her children. All of my older boys have the accompanying GI difficulties but as teens are pretty anti-dietary changes. We tried a GF diet for 2 weeks and they pretty much freaked out the whole time.  

 

My 5th baby was also milk-protein intolerant. We avoided most gluten containing foods for him, though he was on a hypoallergenic formula due to colitis and so I continued to eat gluten. At once year we trialed a "regular" diet and he had a complete relapse. He seemed to react to wheat terribly and we fed him GF for a while. Then it seemed to abate around 18 months. He was ok with small amounts of dairy and wheat, so we thought. But over the next six months he totally fell off his growth curve! He actually lost weight, going from a BMI in the 50th percentile to the 8th in those months. He also struggles with chronic constipation and is now on daily Miralax because it was getting so bad. He just turned 2 and we go for another weight check next month. I am trying to get more calories in him but at the same time am wondering if the foods he is eating are making things worse! I am not sure what to do. 

 

Back to DS4, he started having behavior issues last year (age 4). I noticed they were so much worse when we ate gluten as compared to not. I remembered as I though about it that he got more moody and aggressive when we started wheat as a toddler. Though his bowels were ok, I remember he started hitting us for the first time ever. We trialed a GF diet from January to March of this year and it was helping him a lot but then I got pregnant and I couldn't keep up with all the scratch cooking GF requires and you start to think maybe its all in your head anyway, yk?

 

DH started having health issues as well in the last year, including GI bleeding and severe fatigue. He was diagnosed with mild sleep apnea. His colonoscopy was clear but the GI said his colon seemed "irritated" and very sensitive and to look for connections in his diet - especially dairy or wheat. DH has reported that he tends to bleed the day after we eat something like pizza. He broke out all over on his thighs earlier this year and its getting worse. The pictures look very similar to me to celiac rash - though DH says it doesn't really itch. It fits the description otherwise as a pimple like bump that blisters, pops and leave an open sore that eventually heals over, leaving a purple mark for months. He also gets these on his arms, as well as having psoriasis on his arm, which I have read can also be connected to celiac. He has a hard time believing he could have celiac as he grew up on homebaked bread but I know it can happen at anytime and he struggled with depression as a child and teen and young adult - something that can be connected to undiagnosed celiac.

 

So back to our 4 yr old, he also has a bumpy rash on his bum that looks like pimples. He's had it since he was in diapers. It makes me wonder if it is related to celiac or gluten sensitivity as well. Both he and I have what you might call IBS symptoms that come and go. 

 

I am not one to subject myself or my kids to lots of diagnostics so I really hesitate to go in and start the process of blood draws and biopsies. I could just do a long GF trial and see if it clears up everyone's issues but on the other hand, its easier to commit to when you have solid evidence that its necessary. 

 

What do you think? Am I on the right path here? I am 36 weeks pregnant and if gluten is an issue for me, DH, and our kids, I want to know now before I have another sick newborn. Oh, I wanted to add that both DH and I have a diagnosis of ADD and we recently read that celiac disease is higher in the ADHD population. I also struggle with anxiety and depression. 


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Old 10-20-2013, 09:22 AM
 
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It looks like your post might have been missed, so I'm bumping it up for attention. :bump: Anyone have suggestions or experience to share?


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Old 10-21-2013, 12:08 PM
 
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Hi there! So, IMHO, it sounds like you know that you need to cut out gluten, and that you need validation that it's the right choice....because it s*cks to have to worry about food.  I'm in a similar boat, and I keep wishing that someone would/could give me a cure so that we wouldn't have to worry about it...bread is/was one of my most favorite things in the entire world.  But, sometimes you just gotta do what you gotta do.  It seems pretty clear that gluten is a big offender and that you all will enjoy better health without it. 

 

What you have to decide is if you want to go for a diagnosis.  An actual diagnosis would make things more absolute, especially dealing with others.  There are a lot of benefits to being diagnosed/having a diagnosis.  But it can be a tricky process.  I have no idea if what you are describing is an intolerance or full blown celiac. We have similar issues and I have been throwing the idea of getting tested around in my mind.  However, I can't bring myself to keep DS our myself eating it so that we could "test positive" (it has too much of a negative effect).  I guess a blood test could be less invasive, but it's also much less definitive.

 

If you decide not to test, then it's easier not to take being gluten free as serious at it sounds like you should be taking it....and if everyone is still eating it, and has been for a while now, maybe a diagnosis would help you buckle down and keep it out of your house/life.  It's a hard step to take (and there is a mourning process that goes along with it!), but from the sounds of it, I would definitely avoid gluten, whether or not you get a diagnosis. 

 

HTH and good luck!


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Old 10-21-2013, 01:07 PM
 
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If you do not homeschool and will need accommodations for school, you will need a firm dx. from a Dr.  

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Old 10-23-2013, 08:25 PM
 
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I would also have to agree about some food issues going on.  I have been GF for over 4 years.  My main symptom was fatigue from being anemic....which the gluten caused.  I couldn't absorb the nutrients I needed from my food.  Gluten issues cause a lot of symptoms in people....sounds like you guys are experiencing some.

 

In addition, I am also DF.  Most people who have issues with gluten also have issues with dairy.  These symptoms included bloating and looking like I was pregnant.

 

Eggs are also major culprits for people.  Sometimes when I eat too many eggs I feel really icky. 

 

Before my diagnosis I had been seeing an MD.  I told her how awful I was feeling and to please help me.  She suggested I start yoga.  duh.gif  She really wasn't listening to me.

 

Anyhoo, I decided to see a naturopath.  It was she who ordered a food panel and that is how we determined what foods were bothering me.  After making changes I felt so much better. 

 

Today I see a holistic MD....who specializes in gluten issues.  She is also pretty up to date in helping me with my thryoid issues....and that is what I see her for most.

 

If you haven't already had a food panel done and/or environmental allergy testing...that would be a good place to start.  Or, you can try eliminating suspect foods one at a time. 

 

What if you cut out all dairy first?  i.e. switch to Trader Joe's coconut milk, rice, almond, or even hemp.  As for cheese.....goat and sheep cheese are amazing and well tolerated by most. 

 

One of my daughters has some dairy issues.  She cannot drink glasses of milk but can have dairy in other forms.  She has coconut milk in her cereal and enjoys organic chocolate soy milk in place of hot chocolate.  There are so many options for replacing stuff out there...

 

If it seems that dairy isn't the culprit.....move onto wheat.  Definitely give these food challenges time....or you will go crazy and add in stress that you don't need.

 

It took me some time to deal with all this since I had to eliminate gluten, dairy and eggs all at once.....I really did not know what to eat.  It was difficult and I broke down a lot.  Now I can tolerate eggs.....and very tiny amounts of dairy...like a spoon of ice cream or a small piece of cheese.  But, I will never touch wheat again.  Yes, I have made a few mistakes but luckily I was ok.

 

Hope this helps!

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Old 10-24-2013, 05:00 AM
 
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I agree very much with what the PP said. I just wanted to add that we are a family that needs to avoid multiple foods and its so hard to make those changes at first, but it will soon become your new normal and you won't think much about it. I also wanted to add that its very possible to have withdrawal like symptoms (if the underlying issue is a leaky gut type thing). For me cutting out dairy felt the same as when I quit smoking. It was hard....and unfortunately I can't tolerate even raw milk, cow or goat.
The thing is that if you keep giving your family these foods, their issues are going to get worse. We fell off the wagon at the end of my pregnancy with DD and spent the first two months of her life eating what was available, and my son's physical and mental health tanked (and i would say that a good deal of the time we were still eating what we should have been) . I feel awful, but I know now that its a necessary thing for him.

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Old 11-04-2013, 05:59 PM
 
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I have been gluten free for 3 years and my main symptom was extreme stomach pains. I first tried cutting out dairy,but that did not work so I went to my primary doctor. Long story short, I was diagnosed a few weeks later. For the most part, my family is also gluten free which really helps me stay on track. It was an adjustment at first, but I felt so much better. There are many great resources out there to stay on track. My challenge was not getting bored with the limited food selection. I came across glutenfreefamily as a great way to try new foods.  Once you get into a routine, it becomes easier. While I am the first in my family to have celiac, I am wondering if one of my kids will end up with it down the road.


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Old 11-04-2013, 08:15 PM
 
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My five-year old daughter and I were diagnosed with Celiac eight months ago. It explained so much. I'm not sure what is going on in your family, but I have to say getting a blood test was the best thing we could have done. My daughter went from being a healthy, strictly breast-fed, chubby baby in the 80th percentile to a thin-armed, protruding bellied, anemic, moody four year old. When I heard about a friend who was diagnosed with Celiac I decided to get tested due to our sharing irritable bowel symptoms over the last twenty plus years. Sure enough, I was positive and requested my children get tested. My daughter was positive too. We both had endoscopies to confirm. The good news is that since we have eliminated gluten (wheat, malt, barley), all of the above-mentioned symptoms have vanished and my child is like a new person: happy, healthy and outgoing. She gained almost two and a half pounds the first month! Her poor intestines were so damaged that she was malnourished and it was causing so much distress. We were very lucky to have found the source of her illness and I would recommend anyone with any symptoms related to gluten intolerance (rash, growth issues, moodiness, anemia, etc.) take the blood test to see if the antibodies are active. Ours were off-the-charts high and now they are negative. Best of wishes!

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Old 01-15-2014, 04:10 PM
 
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It sounds like your family has a lot of issues that would be helped by a gfcf diet even if it isn't full blown celiac. We're going through the testing right now and I know how stressful the whole thing can be. I stalled a long time with not wanting to make the change without dx and not wanting to go through the testing for it. I finally had to do something because I was tired of dd being sick. We chose to see a GI and get testing because she is in school and having a diagnosed medical cause for her special diet will make life a lot easier then just trying to convince teachers she doesn't need X,Y and Z foods. I knew if we went full gfcf and started healing I wouldn't want to subject her to months of a normal diet again to be sick just for testing. We have started with dairy free as we did get a confirmed lactose intolerance dx but it hasn't helped much if any. We're waiting on more tests for celiac now. I would definitely do the testing but that's just me. I'm actually considering doing the tests independently myself through anylabtestnow for me since my learning about it for her has pointed out that I have almost every potential symptom there is for it and have for years! :(


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Old 01-15-2014, 04:12 PM
 
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Oh also... I feel like a gfcf diet might help with some issues in my other two but I'm not testing them. DD is the "celiac appearing" one and if she gets diagnosed and we use the diet for her then I think it'll be easier to control diet in the other two to help them, even in the case of the school I don't feel I need a dx for ds when I can prove his sis has celiac and we are a gfcf house for her health. I do believe it is much easier to get a diagnosis in additional family members once one is dx'ed so that may help you as well. 


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