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doulagrl

Family Not Believing W/o Dr Diagnosis

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Hey Everyone,

Has anyone else had problems with people not accepting that you are gluten intolerant based on improvement on gluten free diet?

Even my husband has said, "Well can't you go back on the wheat for 3 months and get the blood test just to be sure" I"m 27wks pregnant, already carrying a child with a cleft lip which could be a result of poor folic acid absorbtion due to intestinal damage, start vomiting 2-3 times a day when I'm on wheat and still am not back up over my pre-pregnancy weight. I have severe constipation, bloating and fatigue when I eat wheat and I feel so much better now that I'm back on a gluten free diet that I never want to go back but he and his family are acting like its all in my head unless I can wave a blood test and biopsy results in front of them to PROVE that I'm gluten intolerant.

I"m so frustrated. I've been chronically ill and exhausted since I was 11 and most people wouldn't accept my symptoms because they didn't have a medical diagnosis for what was wrong with me. Turns out years later when I had a bad relapse in my early twenties that they finally diagnosed me with recurrent CMV (one of two viruses that causes Mono) and said that I should have been on bedrest every time I had an outbreak from childhood on and that I was at high risk for Chronic Fatigue Syndrome because the infection had reactivated so many times. Suddenly everyone believed me since I had a piece of paper that said I was sick! Now the only remaining symptoms from my childhood through till now that the CMV doesn't account for can be caused by gluten intolerance and I'm seeing such improvements in my health since going gluten free. I'm trying to get a blood test for my son because my husband doesn't want me to try him with a gluten free diet so I have to keep him on a regular diet until he can be officially diagnosed, even though he is underweight, has loose stools, lactose intolerance and struggles with anemia!

I'm just so frustrated and wondered if anyone else had similar experiences with their family if they chose to self-diagnosis based on diet alone.

Thanks,

Mel

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Guest nini

I'm sorry you are having such a hard time with your family not believing you. Stick to your convicitions and do what you have to do to keep you and your children healthy. I did have some family members that were skeptical when I first tried to self dx myself and they thought I was crazy. After my ob/gyn told me to go back to eating gluten because the gluten-free diet was "bad for the baby" I ended up developing severe toxemia, delivered my daughter almost 6 weeks early after a very complicated labor and emergency c-section that I now believe could have been avoided had I stuck to my convictions and stayed on the diet. It wasn't until my daughter was 3 and her and I both were very ill that I was correctly dx'ed with Celiac and subsequently put my daughter on the diet. My family believes me now. I just feel that I could have avoided almost 4 years of heartbreak and illness if I had stuck with my initial self dx.

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Hang in there and do what you already seem to know is right. I had my baby at 29 weeks due to celiac. At the very least stay gluten free untill your baby is born for your babies sake. I have had problems through childhood myself and people thought I was putting on a show. I still am having problems convincing some people that this is the problem myself and my daughter are suffering from. You do not have to have there aproval to be gluten free. It sounds very possible from what you describe that your son could have the same problem.....have you taken him to a GI....not that all of them know what they are doing either as my daughters was clueless.....have you gotten blood tests for him......I would try the diet with him and see what happens. Have you talked to you ob about your constapation. I was on a prenatal viatimen that was also a stool softener.....it didn't cure it but it helped. Please stay on the diet for babies sake. Congradualtions on you little one and I hope all goes well. Sorry to hear about the cleft lip thing but doctors can do wonders with those now....hopefully all goes well with that as well.


Myself-Age 25....I have had symptoms since at least 1998 if not since infancy (was diagnosed with malnutrition as a small child)...Positive results with gluten free diet!

Hannah-Age 5.....Has symptoms....Inconclusive blood tests....Positive diet response to both gluten free and lactose free!

Grace-Age 1.....Born at 29 weeks due to me having celiac....Has reflux and a feeding tube.

Husband-Not Celiac......has found that he does feel better when not eating allot of gluten.....is gluten free at home.

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I am so sorry. Definately stay on the gluten-free diet while preg!!! If you decide you want to try for a diagnosis after the pregnancy then go for it but right now you gotta stay on it. It's not worth the risk. I am sorry your family is being unsupportive. I think it is hard for people tounderstand and since gluten is so prevalant in our society it is linked to everything, every social occasion, so it is hard for people to let go of that and understand it. They don't want someone to be deprived of Aunt bertha's special pie you know. I truly wish there was a way to get an accurate diagnosis without being on the gluten free diet. It would be nice if they had a newborn screening they could do. I have a few children I think may have this ( i was diagnosed this year) but they go to see their bio dad sometimes, they will sometime in the spring. He will not follow the diet without a diagnosis, and they have had neg blood tests so far. I have heard some people get a diagnosis thru a naturopath easier than thru a reg md. Maybe they would give you a letter stating they think you have celiac disease and that would shut your family up? Congrats on the baby! How exciting!!!


~Savoring this new world of dark chocolate~

graves disease 1998

pos blood test sept 2006

pos biopsy oct 2006

gluten-free since oct 2006

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I'm so sorry ur fam is bein rude. My mom didn't believe me, I moved out at 17, lived in my car, did whatever I had to do. Finally she came around. I just decided that I wasn't gonna talk to anyone who doesn't believe me. She came around.

Ryan (my hubby) recently cut contact with his mother. She, honestly, was manipulative and hurtful. Celiac notwithstanding. Sometimes u have to make hard choices. You and your children's health is worth it.

As for ur hubby, ask him if he's willing to risk YOUR LIFE for a test result. Because that's what it is. Right b4 I went gluten free, I couldn't get out of bed on my own and I was eating 300cals/day (and still gaining weight). I KNOW that if I went back on gluten for a biopsy, I would die. Trust your body! And if they won't, tell them how serious u are, I know it's harsh, but if they won't accept that you feel BETTER, they obviously don't have your best intrest at heart.

Hope they adjust their attitude *hugs*

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Guest cassidy

Sorry you are going through all that. My husband didn't believe me in the beginning. He called it an "internet diagnosis" and he would pitch fits when I wouldn't go out to eat or eat food his parents served. It was very frustrating to have someone that was not only not being supportive, but was being the opposite.

He said it was hard on him in the beginning because he couldn't go out to eat with me and didn't feel like we were as flexible as before. I still think it was selfish for him to not even consider how I was feeling, but I do see how it was also hard on him. He would also get upset when I would get glutened and feel sick, partly because I didn't want to do anything and partly because he didn't want to see me sick.

I'm pregnant now as well and he I have been feeling crappy because of the baby, but not because of gluten. He has made comments several times about how worried he is that my celiac is going to hurt the baby. I keep trying to tell him that it is ok as long as I stay gluten-free. I want our baby to be perfect but I'm afraid if it isn't, and I'm sure no baby is perfect, that he is going to blame my diet.

You obviously need to do what is best for you and your baby. I haven't found a good way to convince people other than just time. My husband can definitely see that I am feeling better so he did come around but he hasn't learned how to cook for me or gone out of his way to understand what I'm going through.

Hope things get easier.

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I think this resistance is really selfishness. People don't want to be inconvienced by your health issues. It is sad when it is family members. Maybe confronting him with his selfishness and how it could hurt your health and the health of your children could make him see the light?

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First off, let me apologize to you for the inherently stupid reactions & comments from your family.

Your husband is WRONG. A gluten-free diet does nothing wrong to the body if it isn't celiac/gluten intolerant. In fact, most people that eat gluten-free are HEALTHIER than those that don't need to and don't. We eat a larger variety of vegetables, fruits, lean meats, etc. If your son is celiac and doesn't go gluten-free, he will experience greater problems later on in life due to damage that was caused in the early years. There is NO REASON to not take him gluten-free.

Is there any way you can put your foot down on this? Your son's health is at risk if he has celiac. :(

I'm so sorry you are going through this, but please consider insisting that your son be gluten-free - it's really important.

((hugs))


ELIZABETH

gluten-free (04.17.2006)

corn-free (03.27.2007)

xanthan gum-free

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I am so sorry also that you are having to suffer the ignorance of your uneducated hubby. You will also have to stay gluten-free if you breast feed. & I agree with everyone else you HAVE to stay gluten-free while pregnant...

You could get tested thru Enterolab.com the test will be positive for gluten sensitivity for up to one year after being gluten-free, I think that is right. Also you can test for the genes - it is a cheek swab, then if you have two you will know that you have passed one onto each child, & probably your hubby has one or two also, sooo....

re the gluten free diet, your hubby does not know what he is talking about. An apple is gluten free, is that bad for you? He should worship the ground that you walk on for being smart enough to figure this out and to be willing to cook gluten free for your child. Believe me, there are some mothers that will take any out that they can get not to have to go to the trouble to feed their child a wholesome balanced diet. Your hubby needs to know that we eat better than any other segment of the population and get better nutrition on a daily basis than anyone that is eating the Standard American Diet (SAD). Of course if he wants to take a chance on losing his wife and child to another auto-immune illness then he should by all means continue to make sure that his son gets plenty of SAD foods that are consumed by the millions of people that care nothing about what they are eating, smoking, or the drugs that they pop down their throat etc.

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It is hard when people, especially people you love and are close to you second guess you. Stay gluten free for yourself and for you baby. If you have noticed the changes from when you eat gluten and then when stay away from it, thats all the proof you need. As long as you feel better I would keep on it.

It is hard when your husband doesn't believe you and I hope one day he sees how much better your health is. Some people need to see paper results (tests, etc) to acknowledge there was a problem. This might be why he is having a hard time believing you. I hope he comes around for you. Good Luck


~~~~Gluten Free since 9/2004~~~~~~

Friends may come and go but Sillies are Forever!!!!!!!

36_22_10[1].gif

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Even my husband has said, "Well can't you go back on the wheat for 3 months and get the blood test just to be sure"

Can you imagine someone saying "Oh, you think peanuts give you an anaphylactic reaction? Why don't you eat one? Then if you can't breathe, we'll know for sure."

::sigh::

I really don't get it. Considering all the other issues relating to wheat (genetically modified, pesticide treated, etc.) why do people think it's necessary to eat it?

One idea that may or may not be useful...

In my field of work, some people question theories/assumptions in amazingly stupid ways. I have discovered that if you can calmly ask them about *their* theories and slowly pick them apart (with an attitude of curiosity, as in "I'm trying to understand this, how do you see it?") eventually, some of them realize their assumptions are a tad off. The hard part is staying calm and non-judgemental about it. So... try to imagine these questions presented in a very clear and patient way. [like Barbara Walters would ask, maybe?]

-Why does your hubby think you need the test to be sure? I mean, what are his concerns here? That it may be something else?

- Given that 1) if you eat wheat, you are vomiting and so on, and 2) if you do not eat wheat you are not vomiting and so on, what are some possible explanations? What would be some reasons for eating wheat if it seems to result in vomiting and so on?

Given your son's condition and the possibility that a gluten-free diet may help, what are your hubby's concerns about putting him on a gluten-free diet? Is he worried about nutrition? Does he think it's too much trouble?

People put their kids on all sorts of diets... to help reduce hyperactivity, to prevent rickets, etc.

People go on all kinds of diets to improve their health (to lose weight, to lower their cholesterol, etc.)

If you feel better when you lots of oranges, it is possible that maybe you needed more vitamin C.

If you feel terrible after you eat an entire bag of Hershey's Kisses (for example) you might be less likely to do it again in the future, whether or not you conclude that it's not good for you.

If you feel absolutely terrible after you eat wheat...

Way back when, before we had all kinds of doctors to tell us what to do, people figured it out as they went along. "Hey, every time I eat the berries off that kind of shrub, I don't feel so good. I don't think I'll eat those berries anymore." That's still how a lot of biological systems work in the wild. As a random example, certain trees produce a substance in their leaves that make a certain kind of caterpillar sick. As a result, those caterpillars avoid that particular kind of tree. No caterpillar doctors involved (to the best of my knowledge, anyway).

doulagrl, you have my sympathies. Please take at least as much care of yourself as you would one of your pregnant charges. My wish for you is to find a doctor who treats a positive response to diet as a basis for diagnosis, so you can wave around that stupid piece of paper if you have to. I hope you can find even a fraction of the understanding that is on this board somewhere out in the real world.

And please, please, please, stick to your guns here. You and your son both deserve to be and feel healthy.


no wheat, no corn since 2002 (except the occasional accidental exposure)

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Thank you everyone for your support :) I'm going to stay gluten free and I doubt I will ever go back just to get that paper diagnosis. I think my husband's concern for our son is if I put him on a gluten free diet and essentially self-diagnosis him without blood tests that I'm subjecting him to a very restrictive diet for the rest of his childhood and if he chooses to believe me and not go back on gluten to get tested then it will be for the rest of his life. He isn't concerned so much about the nutrition as he knows I will go out of my way to make sure that we are eating healthy. England is a very bread/cake oriented society. We were out this past weekend and places that would have salads in the States like McDonalds, side-walk cafe's etc. had nothing but meat pies, sausages and burgers and I wasn't able to find anything I could eat. He just doesn't want my son to miss out on all the yummy things they eat here on my hunch that gluten is what is causing his problems. I see the doctor on Tuesday about myself and I'm going to push to get a blood test for my son while he is still eating wheat and if it comes back positive then I will test him with a gluten free diet but I won't subject him to the biopsy.

Mel

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Guest cassidy
Thank you everyone for your support :) I'm going to stay gluten free and I doubt I will ever go back just to get that paper diagnosis. I think my husband's concern for our son is if I put him on a gluten free diet and essentially self-diagnosis him without blood tests that I'm subjecting him to a very restrictive diet for the rest of his childhood and if he chooses to believe me and not go back on gluten to get tested then it will be for the rest of his life. He isn't concerned so much about the nutrition as he knows I will go out of my way to make sure that we are eating healthy. England is a very bread/cake oriented society. We were out this past weekend and places that would have salads in the States like McDonalds, side-walk cafe's etc. had nothing but meat pies, sausages and burgers and I wasn't able to find anything I could eat. He just doesn't want my son to miss out on all the yummy things they eat here on my hunch that gluten is what is causing his problems. I see the doctor on Tuesday about myself and I'm going to push to get a blood test for my son while he is still eating wheat and if it comes back positive then I will test him with a gluten free diet but I won't subject him to the biopsy.

Mel

I can totally relate to you. I have already decided that I'm not going to feed my child much gluten. I'm going to do some research and see if it makes sense to introduce it to the child, but then I'm not going constantly feed the child gluten. I will want to get testing done to see if the child has the genes. If the genes show up then I will probably just put the child on a gluten-free diet. I wouldn't want them to miss out on stuff either but that is when you bake gluten-free cupcakes for school and make them whatever they need to fit in. It also doesn't make sense to me to feed a child something that makes me sick. I don't want cheerios all over my house or in my car and I don't want to be constantly touching the stuff. I can only wash my hands so many times.

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