Please Help Pregnant And Self Diagnosed

[onelildream]

Okay, So I'm 25 and pregnant with my second child... Since the day I knew I was pregnant up until now (3 months along) I have dealt with a distended stomach. I thought it was due to being pregnant and was excited about possibly having twins, etc, but then the symptoms came:

In the bathroom for hours after eating anything with gluten

vomiting and stomach aches the whole second day after eating gluten

headaches almost immediately after eating glutened meals

etc.

All my life I have thought I've had lactose intolerance, but a lactase pill has never worked for me. I also have had what I thought to be eczema since 2001, but I've never had it diagnosed, all I know is that it is itchy, I have tons of water blisters, and I scratch until I bleed on my elbows and knees... So anyway, I went to my OB and he said to stay completely away from gluten if I am getting sick because I am losing so much weight when I should be gaining. Unfortunately, I cannot be tested until I have the baby to see if it is Celiac or just gluten intolerance.

My daughter is 2 and deals with consistent constipation. I am worried that if I have celiac, maybe she does too? Has anyone had a young child with celiac? Do they have opposite reactions?

I'm having a really hard time and I have been trying so hard to stay away from gluten, but it's so freakin hard when I'm in denial!! I don't want to believe it. Has anyone heard of just being gluten intolerant in pregnancy? Am I overreacting? Is this maybe just a temporary thing and not due to celiac? Could the symptoms I've had all my life been due to a mild form of celiac and not lactose intolerance (which I have never taken seriously and have always jut dealt with time in the bathroom pretty regularly)

Oh, and if I stay gluten free, how am I going to be tested and have anything conclusive if I have been gluten free for 8 months?!

So frustrated and confused! Please help!

[Ursa Major]

You can have the blood work done while you are pregnant. Just not the biopsy. If your celiac disease blood work is positive, and you have a positive response to the gluten-free diet, that is also diagnostic for celiac disease.

Also, you could have your rash biopsied by a dermatologist. If it is positive for DH (dermatitis herpetiformis), which is ONLY caused by celiac disease then that would be a diagnosis, too.

And then, yes, after you have your blood drawn you absolutely need to stay away from gluten. And I mean 100%. There is no such a thing as a slight gluten intolerance, just as there is no such a thing as slightly pregnant. If you are intolerant to gluten, you need to be strict about the diet.

If you are gluten intolerant (and it sure looks like you are), then it will be dangerous for your baby if you eat gluten. If your villi are damaged you don't absorb needed nutrients, which will also mean that the baby won't get what it needs. Which could lead to miscarriage or premature birth. You don't want to risk that!

And yes, one common celiac disease symptom is constipation. It is also a very common symptom of dairy intolerance. So, your daughter could very well have celiac disease as well. You are never too young to have it. Some babies have celiac disease from birth.

[Fiddle-Faddle]

If gluten is what is causing your problems, you need to stop eating it NOW and never look back. Otherwise, you put your unborn baby at major risk, as gluten intolerance can cause many serious problems in pregnancy, such as hyperemesis, toxemia (aka pre-eclampsia), diabetes, thyroid problems, and Intra Uterine Growth Restriction, any of which can end a pregnancy if uncontrolled.

Also, if you stop eating gluten, and your symptoms disappear, that is the most accurate test and diagnosis of all.

*****Scenario*****

Patient: Doctor, it hurts when I do this (demonstrates)

Obvious answer : Well, then stop doing that.

Typical Doctor's answer: Well, we should have you KEEP doing that while we run bloodwork, and then we'll do an invasive exam along with a risky anesthesia procedure, we'll take biopsies that will cause scar tissue to form, and only THEN will we tell you, MAYBE to stop doing that, if our tests are accurate. If they're not accurate, we'll tell you that you're just fine and that you can continue to do what is obviously harming you.

[Darn210]

I was going to say the same as Ursa . . . so I will reiterate it . . .

You can get your Celiac blood panel done and you can get your rash biopsied. Then go gluten free for the duration of your pregnancy.

If you need help with products/recipes/replacements, you are in the right place. Lots of wonderful people here to help you learn the ropes. Fresh fruits/vegetables/meat are naturally gluten free. That's the first place to start.

You can buy gluten free bread but homemade or from a mix (we use Pamela's brand) is usually much better.

Van's makes a couple of gluten free waffle varieties which are good.

We like Pamela's brand pancakes. (also use them cold for peanut butter/nutella sandwiches)

We also use rice cakes and corn thins (similar to rice cakes but thinner) for peanut butter or tuna salad with a crunch.

Plenty of gluten-free cereals with a few of them mainstream now (Rice Chex now comes gluten-free - make sure it says it on the box, this is a new thing and you don't want an old pkg)

There's a lot of experience on this board all here to help!! It may seem overwhelming at first but once you get a few staples under your belt and build up your confidence, you'll find it's really not that difficult. If you've got a few . . . "What am I going to eat if I can't have <fill in the blank>", then post them and we'll let you know what has worked well for us. And if history is any indication, you'll get a variety of answers/options to choose from.

Good Luck and take care of yourself. You've got the ultimate motivation to do this right.

[ShayFL]

You could get your daughter tested too. Bloodwork, perhaps Enterolab if you dont want her biopsied. But you are lucky in that she is only 2 and you still CONTROL what she eats. So you can start her on a gluten-free diet early and prevent things like autoimmune diseases in your daughter. You could possibly save her from getting Type 1 Diabetes and Cancers which are connected to Celiac. Think of that!!! Hopefully that will get you out of denial and into a pro-active mode. If not for yourself, then for your daughter and unborn child.

[onelildream]

Thanks, Everyone. Of course my kids are most important to me and I will do all I can to protect them both. It's hard to admit this is really happening, but I am doing my best to be gluten free. I am switching my daughter today too. She rarely eats wheat just out of personal preference, but all of her symptoms and mine combined just spells out CELIAC. She has had a rash on her back since birth and it's pretty congruent with DH also. I thought long and hard last night about my other symptoms, migraines all my life, constant bloating, gas, stomach aches and bathroom trips that I attributed to lactose intolerance which I might not even have if a lactase pill never works, anal fissures and bleeding, itchy bumps in DH common places, and a host of other issues. My husband and I were trying to conceive for almost 18 months before getting pregnant, which I read can be a symptom of celiac. At the beginning of this pregnancy I WAS pregnant with twins, but I miscarried one. I know that this is serious and I am pretty sure it was due to malnutrition and the lack of absorbing the nutrients. I just feel pretty lousy that I could have been dealing with this all my life, but never put all these things together until now. Is it common that there's a misdiagnosis with other food intolerances, like how I've always thought it was lactose intolerance? or just ignorance? I can't believe how many things this encompasses and just explains. Thanks for your support. I will be visiting often.

Another question:

What are the benefits of being scoped or tested? I've been almost 100% gluten free for a month, even my rashy bumps are scabs and not active... I'm already commiting to a glutenfree diet and there's NO WAY I'm going back to gluten for 2 months just for some stupid scope. I'd rather die. I know I can do a blood test, but how effective is it when you've been gluten free? I don't know anything about the blood test. My doc didn't even mention it (only a GI doc about a scope after the duration of the pregnancy).

Again, thank you. You all have been very kind and helpful.

[Ursa Major]

Okay, I didn't realize that you have been gluten-free for a month. In that case the blood test will be useless. And to be scoped after you have the baby would mean going back on gluten for three to six months if you even want to have a chance of it being accurate. Don't do it, it's insanity.

The only thing you still can do if you want to have something more concrete is being tested through Open Original Shared Link. Their tests are still accurate up to a year after eliminating gluten, and you don't have to start eating gluten again.

I am glad you and your daughter are gluten-free now. It would be too sad if you miscarried the second baby, too!

I had eight miscarriages, and my youngest daughter should have been a twin but I miscarried one. I wished I would have known about celiac disease back then.

[Welda Johnson]

Hi,

I hope you're feeling better, now that you're on the gluten-free diet! I will be thinking of you and hoping that all goes well. I've dealt with symptoms since age 8 and am now 63, but after going gluten-free I felt so much better. Then I went milk & dairy free and felt even better. Then I eliminated egg whites, yeast and meat, and I feel great. Have you ever eliminated milk, dairy and eggs? Going to fruits, vegetables, meats, nuts and seeds might just be what you need, or you might learn that you can't tolerate other foods (corn, soy, casein, whey, etc. are often culprits) as well. This is such an opportunity to pay attention to what our bodies are telling us.

I was primary daycare provider for my newborn grandson and when he started having problems immediately with milk, I ordered a stool sample test from Enterolab.com and within six weeks we learned that he was intolerant of all grains and all milk & dairy. It took some thought to keep him free of those foods, and lots of reading of labels, but he is now a vibrant five year old. It is well worth the time and effort we invest in this search, in terms of finding health. Keep coming back and we will do all we can to help. Welda