Adament And Ignorant - Our Story

[jjockers]

While my fiancee has posted here on several occasions, I thought I'd paraphrase our experiene with family members. She has celiac disease, lactose intolerance, and diabetes. I'm one of the few (many? I don't know) raised by anti-doctor, anti-immunization, anti-antibiotic, anti-western medicine to have survived to this day with absolutely no known health issues. My mother is a naturopath, nurse practioner, and geriatric message therapist. Cindy, on the other hand, was raised by parents who to-this-day rely blindly on doctors. She was on many pills and perscriptions at a very young age. I'll let her tell her story though.

I wrote the family backdrop because this story involves both sets. Cindy and I have been very health conscious for several years now. We noticed that she was reacting very poorly with food and I, with absolutely no empathy for food allergies, was fairly useless as anything more than a sounding board. She tried various things, an enuvia clense, juice-diet, and various combinations of low-carb, high protein, lots of green vegetables, non-dairy, low glycemic index, etc diets. Ultimately, after doing more research on her food reactions than on our actual paid-for jobs, we (really she, I was only slightly becoming more aware of the condition) decided that she exhibits clear signs of gluten intolerance or celiac disease. For about 6 months, she went on a "dairy free, gluten free" diet. I quote those because while she was careful about labels and didn't buy anything with gluten, we were not especially careful about our appliances or utensils - I was still eating and buying gluten and, in essence, poisoning her. Her symptoms did nonetheless decrease and we took that as a clear sign that she was at least gluten intolerant. We had maintained a fairly routine workout over the year and didn't notice any significant weight loss on her part.

Then we went home. You know, a vacation - actually an engagement party. Her mother would later tell me that upon greeting us, she didn't recognize her own daugher. They visited us 5 months prior. The week progresses. I hear the occasional "she's too skinny" comments. She hears much worse - her birth mother says she looks like she is from Darfur. Her parents rag her the entire time, saying there is no way what she is doing is right, she needs to go see a doctor, etc. She sees her home doctor. The doctor is clueless and made extremely distraught by Cindy's father's very apparent concern. The doctor essentially accuses Cindy of being bolemic and lying about it. She weighed in about 10 pounds less than the previous year. Cindy's parents, having had no luck trying to convince their better educated daughter, ask me how I could let Cindy get so skinny. I'm told I better make sure she sees a doctor. We find out later from my mom that at our engagement party, my fiancee's mom went to my mom and asked for help getting Cindy committed if need be.

Cindy and I are quite frustrated by all of this (see Open Original Shared Link). Nonetheless, we decide to go see a doctor at home. After over a month and several doctor's visits=money, the doctor tells us that Cindy should keep doing what she's been doing. We had spent the past 2 months endlessly frustrated by parents, trying to re-gluten Cindy (for tests), in pain all so that we can waste money and get the result we knew was true beforehand. Self-diagnosing has its limitations, but when there are clear improvements in mood and health, it's pointless to get it 'officially' diagnosed.

On a happier note, Cindy's parents are finally inching forward - they've shown some initiative in doing their own celiac research. Not much though - we think they should be tested since it is genetic. Also, Cindy and I have since gone completely gluten free and we couldn't be happier. The food is better and healthier, she's not in constant pain nor consistently irritated, and creative cooking is simply more fun than pb&j! Also, upon my mom's suggestion, Cindy has started journaling in the form of a healthy celiac recipes blog. I highly recommend anyone under similar circumstances to attempt something similar - make your "problem" become part of the solution.

Hope our story is helpful to someone Having done a good bit of research on my own, I intend to educate as many as I can regarding the disease. It's just not true that a diet w/o gluten for a non-celiac is unhealthy. Quite the contrary!

[Gemini]

What a nice, supportive guy you are to go gluten-free for your fiancee's sake! And you are absolutely correct in that the gluten-free diet, if done correctly, is a very healthy diet. No one needs gluten to survive and be healthy and, from I see every day with my after diagnosis knowledge, I think many more people would benefit from the gluten-free diet.

Your fiancee may end up putting on some weight if she stays strictly gluten-free. I was very underweight pre-dx and everyone thought I was bulemic/anorexic also because I ate so much and never gained weight. You find out who your true friends are in times like these! After 2 1/2 years gluten-free, I have gained 15 pounds and filled out. No more skinny arms and size 0 pants! I have learned to do what's best for me and the hell with everyone who does not understand. My family are still in denial and won't be tested and most all of them have symptoms. And here I thought they were smart people.

Stick to your guns and best of luck to you both!

[p38lightningbolt]

I lost 25 pounds when I first went gluten free. I went from 130 to 105 within three months (I'm 5'6"). My whole family kept telling me that they were worried about me, and my boyfriend (now husband) was constantly telling me that I was too skinny and that I looked awful. I really didn't care what any of them said. For the first time I could remember, I felt good! I had energy, I wasn't sick, and I didn't spend nearly as much time in the bathroom! Luckily my GP was very supportive. He told me that if I felt good, that was the most important thing. Within 3 more months, I was back up to 120, my normal weight, and I've pretty much maintained that weight since then. Well, except when I was pregnant. I lost all of the baby weight within 3 months, which I'm sure would never have happened if I wasn't gluten free (and breastfeeding).

[Joss]

Great to hear how supportive you are to Cindy. A man like you is one in a million. Keep up the good work.

Now I am older and I have had severe asthma all my life. The fact that I have to be careful around food should be obvious. But no, my daughter thinks I am funny about food. She has even told me that she just eats food and does not analyse it. I had a positive blood test taken in 2001, but she doesn't care. She still thinks I am making it up and that I have a unhealthy attitude towards food.

I do admit that I worry about my older sister that I live with. She has a host of gastrointestinal problems Gerd and is a borderline diabetic. DD thinks she is just looking for attention and has absolutely nothing wrong with her and I am only worried about her because I have a fat phobia. In fact she thinks I make all of this up to keep slim.

I am so depressed by her saying that I troll the net looking for illnesses, grrr. The fact is that she is bedridden most of the time with RSD (CRPS) and she too would benefits from a gluten free diet. My beautiful GD has recently had 2 seizures and I would love to tell her about the gluten link, but I am not going to be abused ever again about my 'phantom, net induced' illnesses.

So this is why I want to thank you for being so supportive. I wish you both every good wish for your future together.

Joss

[NorthernElf]

Wow, I'm impressed OP - you two sure stuck to your guns against a lot of opposition.

I'm also one of those who lost weight AFTER going gluten-free. I wasn't big to begin with but dropped about 5 pounds and that set off some alarm bells from my folks too. Now that I am strictly gluten-free my weight is very stable. I'm very active (fitness instructor & enthusiast) so I make sure I eat enough and that can be a struggle. I tend to eat very healthy and healthier foods generally have a lower calorie content.

My theory is that gluten really bloats me. Sinus problems are part of my gluten symptoms (part of a list!) - they really swell and irritate me when I get glutened. Why wouldn't the body as a whole retain some fluids ? Plus, gluten stresses my body and the body is never very efficient under stress.

As you know, once you find you what makes you feel well, you need to stick with it. Who needs digestive upset, lethargy, and general (extreme!) crankiness (as well as joint pain, and a slew of other problems) !!!! Bottom line is that while I may be leaner, I feel 100x better and have more energy...which has to be a good thing !