Newbie-need Support/advice

[doulagrl]

Hello Everyone,

I'm new to the group. I know this post is long but if you have time please read and respond because I could realy use some support.

I first suspected a gluten intolerence about six months ago based on what had happened after my son was born. He had intense bloating, stomach pains and gas and since I was breastfeeding him I had to eliminate almost everything from my diet. I was down to unseasoned grilled meats, carrots, peas, rice milk, rice cereal and some fruit. Amazingly for the first time since childhood I stopped being exhausted all the time and my chronic constipation went away. I had more energy on 4hrs sleep a night than I had previously on 10-12hrs. When he started to improve and I began to add things back into my diet suddenly the fatigue returned along with the constipation/bloating and anemia. When I started reading about celiac I realized I matched a lot of the symptoms including having suffered multiple miscarriages and am now carrying a baby with a cleft lip that may be linked to a folic acid deficiancy in early pregnancy. About 8wks ago I decided to try going gluten free. I'm currently pregnant and the change was amazing, my energy levels went up, even though I was getting less fibre my constipation went away and the severe vomiting I had had since 6wks stopped. I thought the latter was coincidence because I was in my second trimester even though I had severe vomiting all through my previous pregnancy but last week when I added gluten back in I started throwing up 2-3times per day again after two months of being well. I suspect I've been actively intolerent since childhood. As a child I was underweight, chronically anemic and fatigued. We had always assumed this was a result of me having recurring CMV (one of the viruses that causes mono) and had been aggravated by recently contracting Epstein Barr (the other virus that causese mono) I had given up on every having energy and being healthy again until I had such a wonderful six months after my son was born.

I have an appointment with my doctor in two weeks to discuss this but after doing some reading I realize now they won't be able to test me because I've been on a gluten free diet. I was going to try to add it back in for 6-12wks but I've just felt so terrible since I've started eating it again that I'm going to have to cut it back out. Will he even be able to diagnosis me now or do you think he will confirm my self-daignosis based on the improvement on a gluten free diet? Also I'm very concerned my son may have this as well. He is 2 1/2, lactose intolerent, began falling behind on the growth scale when I started giving him solid food and adding wheat back into my own diet, he is chronically anemic and always has loose stools. Also I've noticed when he has wheat cereal for breakfast if we don't wipe if off his face right away when he is done he breaks out in little bumps.

I'm currently living in England and it is very difficult to get the doctors over here to do any type of testing especially on children because we have a government funded health system. I'm hoping the doctor I see will at least have some experience with this or be willing to refer us to someone who does.

Does anyone have any suggestion for dealing with a doctor when seeking a diagnosis of Celiacs? Is it worth the misery of adding wheat back in just to get a medical confirmation especially considering I'm pregnant?

Any advice or support would be greatly appreciated.

Thanks,

Melody

[happygirl]

Melody,

Welcome to the board! You have found the best place for information and knowledge. Make sure to read on celiac.com, the parent site to this board---there is SO much on there. I love it.

I only have a min to post, but after reading your post, I had to just say hi. Couple things;

Your son should most definitely be tested asap. The full blood panel you need run (www.celiaccenter.org and click on Frequently Asked Questions--- Dr. fasano is a leading expert in Celiac). Make sure they run the FULL panel. Often, doctors only run part.

For you, I don't know what to say. Having an official diagnosis is great, but going gluten free and just being healthy is great too. You don't need a diagnosis for EITHER you or your son to eat gluten free. Does it make it easier, yes. I highly recommend trying to get a diagnosis, but at some point, you just have to do what is best for you. But your son would be the easiest to be tested. Just so you know, you can be "only" gluten intolerant and NOT have Celiac (i.e., tests come back normal). If this is the case for you or your family, taking gluten out is enough proof if it makes you feel better.

Most of all, I highly recommend Dr. Peter Green's book "Celiac Disease: A Hidden Epidemic" He is another leading researcher/physician, but he is at Columbia University in NYC. I wish I had this book when I was diagnosed...it helps to have it as a reference to talk to your doctor as well.

Best of luck, and i'm sure others will chime in. Let us know what we can do to help. No matter what the problem (Celiac, gluten intolerance, gluten allergy (all of which are different things), or something entirely unrelated), I hope that you find answers to improve your health.

Take care,

Laura

[GFBetsy]

I think (though the posters from England will have to chime in with more info) that there are some advantages to being clinically diagnosed in England that don't exist in the US. For instance, I have heard that those who are diagnosed with celiac get their gluten free foods at some sort of a discount because it is a prescription for a disease. So pursuing a formal diagnosis might be worth it for you.

That being said, I personally wouldn't go back on wheat during your pregnancy, especially becuase it makes you have so many vomiting problems. So if you want to pursue a "clinical" diagnosis for yourself, I suggest you wait until your baby is born. (Being pregnant can be tough even when you aren't throwing up the whole time . . . .) Set an appointment for several months after your baby is born (so you can have a month or so to deal with getting used to a new baby before you put yourself into the gluten-induced exhaustion). You have to be eating gluten consistently for about 3 months prior to testing for the results to be accurate, they say.

As for your son . . . push as hard as you can to get him tested. Explain the difference you've seen in yourself and the problems you've seen in him and the genetic component of this disease. Explain that you are going to be tested yourself after the birth of your baby (if you plan to do that), but that you want to have your son tested right away because you don't want him to fall any further behind in growth while you are waiting to be tested yourself.

Good luck with your pregnancy and with the recalcitrant medical system!

[elye]

Hi, Melody!

Welcome!

Something else to keep in mind: The celiac blood panel can (and my understanding is that, at least in North America, it is not an infrequent happening) give false negatives. The biopsy can, as well. My father tested "negative" on the celiac panel, and continued to feel lousy. I convinced him to go gluten-free (after all, it is hereditary so I did get it from somewhere!). He now feels unbelievably better. Here in Canada we also have government healthcare, so once a blood test comes back "negative" (or is erroneously read as "negative"), they breathe a sigh of relief and tell you they won't be sending you for the biopsy because, well, you're negative! For this reason, I truly feel that the only valuable diagnostic tool for this disease is dietary response. You don't need permission from a doctor to go gluten-free, and many here know they are celiac simply due to the life-altering changes that happened once they changed their diet.

Food for thought!

[Mosaics]

You might also want to consider a DNA test. From what I understand, it doesn't matter if you are eating gluten or not for that test. My mother had a DNA test and it was a simple mouth swab.

[nikki-uk]

Hi Melody,

I'm in the UK and my husband and son are both diagnosed coeliacs.

You and your son both sound as if you both have coeliac disease.

First off - you are right in thinking that being gluten-free will give you a 'false negative' on the blood tests.

You would need to do a 'gluten challenge' to gain positive bloods and then biopsies for a formal diagnosis of celiac disease which with our NHS system could take a long time (some areas have long waiting lists for endoscopies )

Now as you are pregnant - I definitely wouldn't recommend you do that, it would be too risky.

The benefits of a 'formal' diagnosis are some prescription foods and follow up care through a Gastroenteroligist and scanning for possible osteoporosis (a common side effect of celiac disease)

Having said that , it rather depends on the G.P/Gastro. It really is up to their discression if they want to diagnose you as a coeliac without the relevant tests. There are some good G.P's out there that will allow you prescription foods without positive biopsies - but not many

I would however go to see your G.P and explain the situation you are in.

You may also want to contact Coeliac UK for their advice.

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Regarding your son again the first port of call would be the G.P ( or your health visitor if you have one)

I would ask for a referral to a paediatrician for him as blood tests for celiac disease are notoriously unreliable in infants and I'm afraid most G.P's are woefully uneducated about coeliac and how best to diagnose.

I hope you continue to feel better gluten-free and that the pregnancy goes ok - and that you at least get a diagnosis for your little guy

[happygirl]

DNA testing does not prove that you have Celiac though. The two genes associated with Celiac (HLA-DQ2 and DQ8) are very common in the population. About 40% of the population has one or both of the genes and I think its something like 95% of Celiacs has one or both. So, just having the gene doesn't mean you have it. On the converse, NOT having one of the genes doesn't mean that you aren't gluten intolerant/but not a "celiac." Either way-if gluten is the problem, no matter the diagnosis, the treatment is still the same.

That being said, I was gene tested