Just Need To Vent

[junevarn]

Hello all,

I decided today not to be on another support group.(The Yeast COnnection) Several people there said that celiac is not genetic and even alluded to the fact that " some people think everything is genetic". (refering to me). One woman whose daughter had very high levels of antibodies and had Hashimoto's Thyroiditis was still feeding her daughter gluten!.

I was trying to give a new person there who was just diagnosed some support. I refered her here.

It was extremely upsetting to me that people were giving out erroneous information about something that can be life threatening if not corrected. I have suffered for ten years becuase people didn't believe that something was wrong with me. I just didn't want it to happen to anyone else. I'm a bit depressed right now so I decided to make myself a smoothie with soy milk, rice protein powder,

raspberries and stevia.

I guess I just need a little emotional support. I feel like I want to cry.

June

[Guest edatgluten]

What a bunch of idiots. These are probably the same people who think that vaccinations harm instead of help.

I have diabetes along with my celiacs and I educate people as much as I am able. I also have Hashimotos. I manage things as best as I can and most people are nice. I don't accept anything that's not logical.

You are right to vent. I think I'll try your smoothie recipe. It sounds pretty good.

Take care.

Ed

[tarnalberry]

I think, and this is definitely a broad assumption, that this is one of the reasons why the idea of candidia as a *real* systemic issue isn't respected by many people; a vocal portion of the group who does believe that systemic yeast overgrowth in otherwise mostly healthy people can be a problem is also very dismissive of other answers, saying that the answer is always yeast. I know that not everyone who believes systemic yeast could be a somewhat prevalent problem believes that - probably a majority don't believe 'the answer' is always yeast - but those ones that seem to can "scream" awfully loud. It's unfortunate that it turns some people - particularly doctors - off, when it might help some of them to investigate.

I had a similar thing happen on another message board for an unrelated issue with someone claiming 'the source of all our problems was yeast', and for some it really wasn't, but this person was very very vocal and detracted from the rest of the support group.

Of course, I had the same thing happen with someone claiming celiac was 'the source of all our problems', and turns out it was a non-trivial portion of it for me, so I know there's some help in those statements, even if hearing the message is ... less than pleasant.

[KaitiUSA]

Hang in there. Some people just don't know about celiac and they form some type of opinion before knowing facts. You know your right, and we know your right, and the facts PROVE you are right.

I had people tell me "you don't have to be gluten free, just get treated for candida and it will go away" and that sort of thing.

I feel bad for the people that actually believe what they are saying because ultimately they will be the ones who will suffer and they will think they are on the right track.

[junevarn]

Thanks for the support guys.

Gluten intolerance was the start of it for me according to my doc. I have the gene and antibodies were detected in stool. I didn't have a biopsy but he thinks that I probably had damage if not severe. This led to my immune system being affected and getting all the infections I had.

The first step was to go off gluten then treat the infections, then heal the gut with probiotcs and other nutrients. It seems to be working! I feel better than I have in a long time, no severe attacks. My friends say that I look like a new person.

I'll never touch gluten again no matter what anyone says.

Thanks again,

June

[ianm]

I have never been tested but there is no doubt that gluten was the source of my ill health for 36 years. If I had known about testing prior to my learning about Celiac I would have done it. The problem is that there is no way in hell I am going to eat gluten for three months just to verify what I already know. There are some people in my life who constantly jump on my case about getting tested. I have repeatedly explained to them that I cannot afford to eat gluten. These are people who have known me for a long time and know how sick I was and they still don't get it. I explain to them that there is no cure other than a gluten free diet so what good is testing going to do for me now? I tell them that I no longer have chronic fatigue, brain fog and all of the other things I suffered from before. These people will say how amazing it is that I lost 80 pounds but I should get tested. I tell them no I don't want to go back to weighing 250+ pounds again. As a result I deal with these people only when I absolutely have to. Some people just revel in their ignorance and stupidty.

[junevarn]

You guys are all so great! Thanks for the validation.

I just came back from an hour walk with my husband where I actually could keep on going. He remarked how much better I am doing now. He usually has more endurance than I do.

Everyone tells me how much better I look now. A friend I had lunch with yesterday said how good I looked and how my face had color now. I am looking foward to doing things now instead of worrying about where the bathrooms are, and what would happen if I got sick..

Last night I went to the gym and was able to work out with weights! I haven't done that in ages. I am starting to gain weight as well.

Thank goodness for this site and for all of you!!

Sincerely,

June

[stef-the-kicking-cuty]

Hi June,

some people are just stupid. I know you feel bad, cause I had a similar situation on another message board once. But you just have to ignore them . There's no other way unfortunately. You did your best in giving them information. If they don't want to, it's their own fault and not yours . When this happened to me a couple of month ago I cried, too. But it's really not your fault.

[junevarn]

Dear Stef,

Thanks for that. It was especially hard since that woman was doing this to her teenage daughter! If I knew that woman I would have called child protective services! Ignorance is a terrible thing.

Sincerely,

June

[Guest nini]

I've actually run into people who think that the gluten free diet is just another lifestyle choice like being a vegetarian, and they've made fun of "the crazy mother that only feeds her kid gluten free stuff" I try to not let it bug me because they are just ignorant. I've had to gently correct some of these "comedians" who think it's funny to make reference to my "neurosis". I'm NOT neurotic, I KNOW we have celiac and that this diet is NOT a lifestyle choice. It's mandatory. The proof is in the significant improvement to our health, and these ignoramuses do not have to live with the health problems we get when glutened. We do.

[Guest BellyTimber]

June, there will always be constant debating about the meaning of the word 'genetics', and all other issues. We want to help others because we don't see why there should be help for one person and not for the next person (whichever one we are). We have had a narrow squeak after many years of horrible suffering, and it alarms us to hear this is still being perpetuated no more than a computer monitor screen away. When it drains us too much we've got to leave them to it, maybe they'll get the help they need through someone else and it doesn't have to be through us!

Ian, we are having a massive debate in the UK about the gluten challenge at the moment. It is horrendously and amazingly difficult to get the majority of professionals and even a lot of coeliacs to agree that when a person has serious abdominal or nerve symptoms they need the biopsy straight away, then they will not need to be delayed coming off gluten let alone go back on it. People with celiac disease and gluten and wheat sensitivity are being placed in a psoition of such unreality it's understandable they should feel they should trust their own views better than others'. This mania for putting biopsies off for months or years has done huge damage to health and confidence.

Ed, am intrigued by your allusion to vaccinations and a class of people with a certain viewpoint on them ... I like logic as well ... for you is this subject tied in with gluten-free living, celiac disease or similar areas?

[KaitiUSA]

What a bunch of idiots. These are probably the same people who think that vaccinations harm instead of help.

I'm not sure I would classify people who think vaccinations harm you as idiots.

I personally see both sides of the issue and know people who have had serious illnesses due to getting the vaccination but at the same time it benefits alot of people as well so I see the logic of both sides.

[Guest edatgluten]

Bad choice of words. Idiots is a little harsh. What set me off was a recent report from a Mid-East country that wasn't allowing Polio vaccinations because they said it is an Western plot to sterilize them.

Ed

[KaitiUSA]

What did the report say? I know about reports that anger me so I understand where you are coming from

[Guest edatgluten]

It was a story from last year. It wasn't the Mid-East as I though. Here is part of it:

"Kano - The leader of a heavily Muslim Nigerian state defended its boycott of a 10-nation polio immunisation campaign, asserting the spread of the disease was a "lesser evil" than rendering "hundreds of thousands" infertile with vaccines that some Islamic leaders have deemed a US plot against Muslims.

Kano state Governor Ibrahim Shekarau said on Wednesday he "regrets reports" that delaying vaccinations is worsening a polio epidemic that UN officials say has spread across Nigeria's borders to at least seven nations where the disease had been eradicated.

Shekarau has suspended door-to-door vaccinations in Kano since October.

Sacrifice 10 children

The Kano governor said he judged "it is a lesser of two evils to sacrifice two, three, four, five, even 10 children (to polio) than allow hundreds of thousands or possibly millions of girl-children likely to be rendered infertile." "

[connole1056]

I hate it when people think a gluten-free diet is a lifestyle choice I made for my daughter. Like I would force this on anyone!! If someone wants to make the choice to eat gluten-free that is fine-alot of work for them, but fine. They do not seem to realize that they can afford to ingest gluten, if they so choose, without getting sick while a celiac cannot. I cannot tell you how many people have said "Did you ever give her a little, just to see what will happen?" I usually respond with something sarcastic as I find that gets right to the point. "Did you ever give rat poison to your child, just to see what happens?" does the trick. I know it is rude, but so are the comments I hear about whether or not celiac disease is real. It is especially frustrating from people who know she was diagnosed with a biopsy. How much more proof is neccessary? I did not put her on a gluten-free diet just to see if she would like it for goodness sake!

Anyway, we probably all have our stories about things like June mentioned. I just had to get that off my chest. I have little tolerance for stupidity, like the kind June spoke of.

As for the vaccine issue, some people do have problems, but it cannot be denied the risks to the entire population outweigh those. I do know it is terrible that some people suffer, I am not cold and unfeeling. I am looking at the big picture, as I think Ed is. Eradicating diseases that have killed/injured millions is the bigger picture that has to be looked at. Personally I would not want my children in school with someone who did not get a vaccination. I think it is wrong to expose others to something like that. In this state though, all children have to have proof of vaccinations before entering school though, so I do not have to worry unless I move. I think in a few years it will not even be an issue. Things like this have happened and been addressed throughout history. There are many issues we can look back on and wonder "What were they thinking?" It is obviously hard to be the exception, I understand that, so please no hate mail! I jsut believe the greater good has to be considered.

[westiepaws]

I'm with Katie on the vaccine question. It probably did my brother and I a lot of good, I suppose. But I have a friend whose mother did not let him be vaccinated, and he's a-okay and actually, a total hunk! Gorgeous! Fit! Healthy!

I also know a perfectly healthy fellow my age who ended up in a wheelchair permanently paralyzed and mentally compromised as a result of a vaccine reaction. I am glad I don't have kids, because it would be a hard decision for me.

All of this, celiac, vaccine reactions, everything -- it just goes to show that aside from basic similarities that make us human, we're biochemically individual and unique -- and wonderfully made, if I might add!

Hugs,

westiepaws