Fed Up With Wheat And Diagnostics

[Mme]

I'm sick. Really sick. My husband has never seen me with a fever. In 8 years. And I've been running about 102 for 3 days. I usually get a LOWER temperature with illness.

What happened? Well, it's a virus. But I've also been trying to get proper testing for celiac.

Sooo, over Easter, I stuffed wheat into my body to try and register on the blood tests. By Easter Monday, I was an itchy wheezy mess and I needed Benadryl to function. My IgA was 19 and my TT was 5. Grrrh. Not even close to celiac ranges.

Then I got sick. So I stopped eating wheat. And got a lot better. After 2 days of total gluten-free, I started to recover peripheral nerve function and circulation in my hands and feet. It was awesome. And affirming.

Then I went to the GI dept. They were nice. But they wanted me back on wheat for the biopsy and they didn't think it likely that I had celiac. The official stats are something like 5% of celiacs testing low on the TT test.

Mind you, my grandmother died of celiac-associated small bowel cancer and had cardinal symptoms. My father had delayed puberty and, recently, GI symptoms that wouldn't go away until he ate only rice and potatoes. I've got the family neuropathy, badly mineralized teeth, skin contact rashes from wheat, exhaustion, low immune function, allergic asthma, etc. But none of us are "typical" celiacs. We're not skinny. We don't have the diarrhea. And now it looks like we might not show up on tests.

So I went back on wheat last Wednesday for the biopsy. I never thought I would be forcing myself to eat cupcakes. But I had trouble making myself eat wheat everyday.

By Friday, I couldn't breathe and I started running a temp of 102. And I've been sick as a dog ever since. The last wheat I ate was Saturday. It made my fever spike. And my airways hurt. Now I'm slowing feeling normal. After antiobiotics and three days of fevers. Blech.

So I'm mad. So mad. No one listens to the different family issues. The doctors don't care about the neuropathy. They say it's all "unconnected." Raynauds, persistent GI issues, verifiable deaths, schizotypal disorders and depression, bad teeth, delayed growth, an Irish great-great-grandmother who seems to have been the first one with the problems.

Probably the lowest moment was when I had a specialist nutritionist who's a coordinator at the celiac center here tell me I *wasn't* celiac based on blood work alone. After looking at a detailed family history. Then again, she didn't seem to recognize the significance of adenocarcinoma of the jejunum...

Is there is a club for people who have something that looks and acts exactly like celiac but isn't clinically verifiable as celiac? I've been trying to collaborate with the medical establishment, for the sake of family documentation and also for my own sense of thoroughness, but I can't stay on wheat long enough to take the damn tests anymore. At least I've satisfied my own conscience and I know what the problem is.

But grrrh! Arghh!

(end of rant)

[Ursa Major]

Your doctors are ignorant. Being back on wheat for a week isn't going to assure positive bloodwork, and a biopsy will be just as useless, unless you eat gluten containing food for possibly up to a year or more! Unless you are willing to be sick for that long, don't bother.

You know that gluten is your problem. We believe you, I hope your husband does. It's too bad that even the nutritionist is so ignorant. It makes me mad!

All this testing might kill you, and possibly cause irreparable damage. Who cares what your doctor says, just go back to your healthy gluten free self, and forget about those ignorant people.

[Mme]

Thank you Ursula! The affirmations really help. The testing IS dangerous. And the cure is (relatively) simple.

Yes, my husband believes me, thank goodness. As does my mom, who's a doctor. She's the one who put together the correlations with me.

I just can't quite believe I'm at an excellent medical center with the only celiac center in New England, I have a medical professional in the family, and I'm still going through this sort of bs.

The saddest part was that the nutritionist has celiac herself

I wasn't really gluten free, just gluten minimal before trying to wheat-load for the testing. I should have showed up if I was going to. But when I started eating gluten-free after the blood test results, it AMAZED me how quick my response to eating gluten-free was. Just... miraculous, really.

[lisaemu]

I'm sick. Really sick. My husband has never seen me with a fever. In 8 years. And I've been running about 102 for 3 days. I usually get a LOWER temperature with illness.

What happened? Well, it's a virus. But I've also been trying to get proper testing for celiac.

Sooo, over Easter, I stuffed wheat into my body to try and register on the blood tests. By Easter Monday, I was an itchy wheezy mess and I needed Benadryl to function. My IgA was 19 and my TT was 5. Grrrh. Not even close to celiac ranges.

Then I got sick. So I stopped eating wheat. And got a lot better. After 2 days of total gluten-free, I started to recover peripheral nerve function and circulation in my hands and feet. It was awesome. And affirming.

Then I went to the GI dept. They were nice. But they wanted me back on wheat for the biopsy and they didn't think it likely that I had celiac. The official stats are something like 5% of celiacs testing low on the TT test.

Mind you, my grandmother died of celiac-associated small bowel cancer and had cardinal symptoms. My father had delayed puberty and, recently, GI symptoms that wouldn't go away until he ate only rice and potatoes. I've got the family neuropathy, badly mineralized teeth, skin contact rashes from wheat, exhaustion, low immune function, allergic asthma, etc. But none of us are "typical" celiacs. We're not skinny. We don't have the diarrhea. And now it looks like we might not show up on tests.

So I went back on wheat last Wednesday for the biopsy. I never thought I would be forcing myself to eat cupcakes. But I had trouble making myself eat wheat everyday.

By Friday, I couldn't breathe and I started running a temp of 102. And I've been sick as a dog ever since. The last wheat I ate was Saturday. It made my fever spike. And my airways hurt. Now I'm slowing feeling normal. After antiobiotics and three days of fevers. Blech.

So I'm mad. So mad. No one listens to the different family issues. The doctors don't care about the neuropathy. They say it's all "unconnected." Raynauds, persistent GI issues, verifiable deaths, schizotypal disorders and depression, bad teeth, delayed growth, an Irish great-great-grandmother who seems to have been the first one with the problems.

Probably the lowest moment was when I had a specialist nutritionist who's a coordinator at the celiac center here tell me I *wasn't* celiac based on blood work alone. After looking at a detailed family history. Then again, she didn't seem to recognize the significance of adenocarcinoma of the jejunum...

Is there is a club for people who have something that looks and acts exactly like celiac but isn't clinically verifiable as celiac? I've been trying to collaborate with the medical establishment, for the sake of family documentation and also for my own sense of thoroughness, but I can't stay on wheat long enough to take the damn tests anymore. At least I've satisfied my own conscience and I know what the problem is.

But grrrh! Arghh!

(end of rant)

Wow sorry for all of the frustration you are going through. Even though I seem to have a lot of problem with gluten and other things connected to it, I tested negative for it on the blood test too (tho i stopped eating gluten) Once it came back I figured that the doctors know best, so i went back to eating gluten and feeling like crap. I finally came back to the gluten free diet a few months ago, and finally started feeling better. But since I tested negative, as soon as i start feeling better i kept "testing" myself..and gettin REALLY sick. Finally I just realized that if it makes me sick, theres no point in eating it. Sometiimes you just have to do whats right for your body, and doctors cant always tell you what that is. It seems like doctors are extrememly behind in dealing with celiacs and gluten intollerance.

[Felidae]

First, you don't have to be skinny and have diarrhea to have celiac. Many people have constipation.

Second, listen to your body. I don't have a celiac diagnosis either, but my body tells me I do. Stay off gluten if you do not require the diagnosis for financial or other reasons. It seems like you are much healthier without it.

[Mme]

Felidae, it's soooo true that you have to listen to your body. Healthy body is good. Sick body is bad. The gut knows the difference

And having fevers just sucks.

I just feel so lucky to have groups like this one to find out more about the realities of the gluten-intolerance spectrum and testing difficulties. Not to mention the support for dealing with doctors!

Lisaemu, thanks for sharing your own path through this and your sympathy. I totally agree that doctors are behind. They just weren't trained in celiac and gluten issues and it's going to take years for the studies to catch up with the realities.

[Matilda]

..

[Mme]

I don't quite understand your rant. You know that no Gi is going to tell you to eat gluten-free for the rest of your life just on the basis of family history and symptoms. You said you weren't entirely gluten-free anyway. If you decide you can't tolerate the trial of gluten that's you're own perfectly reasonable decision, but I can't see any reason to rant against your GI in there. You've just decided it's not worth your while to do what they suggested. Fair enough.

Hey Matilda.

My GIs are very reasonable people for specialists. And the younger one who is treating me is kind to boot. I'm frustrated that I can't keep on the wheat without getting sick now. This is a new thing for me. I had my symptoms laid bare by a bad norovirus and two other flus this year. As did my father and sister. So we haven't been gluten free, just intolerant without knowing it and then suddenly SICK.

My primary physician is also reasonable. She is leaving open a doubt even after the blood tests. She wants to help me regardless of whether celiac is found.

The nutritionist was stupid. Plain and simple. Not going back to her.

I just sort of wish the knowledge of how much is waiting to be done on celiac would settle in. That someone would admit that the information is incomplete instead of telling me I'm definitely not celiac. I don't believe a TT is 95% accurate and I don't believe current diagnostics are adequate. I know that research might catch up to me in 20 years or so but I can't afford to wait. After all, people in my family die of this.

That being said, as Felidae points out, if you don't need the diagnosis for practical reasons, why not live well without it? I think this is the best course and I'm happy I know how to (attempt) to pursue it. I'm a little shaky on living gluten-free but I'm learning. Especially from the people here. And I've seen what it does for me, so I don't have to doubt myself.

I think the essence of a rant is being able to be mad at something that might be no one's actual fault. To be angered by circumstances that are perhaps logical but still harmful and maybe even sad.

[nettiebeads]

I personally believe that this is supposed to be a safe place to rant without judgemental responses. I hope I'm not wrong. Anyhow, good for you for going gluten-free w/o a "positive" dx of celiac. My current gp believes that the tests are not reliable enough to put one's complete faith in them. What you might want to do is the enterolab which will give you the genetic results also. I plan on doing that in the future - I want to know what I might have already passed on to my dd. I was dx'd by diet challenge alone - which is what you have done in a way - On gluten you feel like s**t, off gluten, you feel SO much better. What more can you say?

BTW, I was dx'd by diet alone. No gluten, no D. On gluten, lots of D. There are 200 or more symptoms of celiac, and then there are those who are asymptomatic. So it's a hard disease to pinpoint, but listen to your body is the best choice, I think.

Annette

[Guest nini]

trust your body and stay gluten-free.

In the beginning I tried the gluten-free diet and it helped but I let a Dr. talk me into going off of it, and consequently very nearly died and very nearly killed my baby at the same time... (very complicated pregnancy)... it took another three years of eating gluten before I was accurately dx'ed and I was very ill by this point and very close to dying. I wish I had trusted my gut (literally) from the beginning)... my daughter was dx'ed by positive dietary response and genetic predisposition alone... her bloodwork was inconclusive (I found out they didn't even do the complete celiac panel) and her GI refused to consider a dx of Celiac because she had constipation along with diarrhea. So he said she just had IBS... If I had listened to that turkey, where would my daughter be now? How sick would she be? How far behind in development would she be? I don't want to know.

[CarlaB]

All my tests were inconclusive, but for the blood test, the doc didn't suggest a gluten challenge. For the biopsy I ate gluten almost daily for 6 weeks. Some days I just couldn't do it as it made me so sick. I was barely functional by the end of the six weeks! No sign of celiac on the tests. I went to Enterolab so that I would know for sure, more so I could see if I needed to have my kids tested than anything else. I have two genes for gluten intolerance and tested positive for an active gluten problem.

One thing that did bother me about the docs is that I kept telling them about a rash on my scalp and blisters that I get on my neck and face, close to my hairline, but they wouldn't test them. Now that I'm gluten free, I feel fine and the rash/blisters are gone. My elbows are also very smooth.

With so many people here not "officially" diagnosed, I think you've found your club.

[aikiducky]

You could consider gene testing to see what kind of combination of genes you and your family has. It might be that your of a type that doesn't get "classic" celiac. There's growing recognition that there are other kinds of gluten intolerances, they just haven't been reseached enough yet.

Bottom line is anyway that you know that you need to be on the diet. But I can understand the frustration.

Pauliina

[JenAnderson]

I wasn't dx'd Celiac either. Being a military spouse, you have to take what you get as far as medical care, and most of the Dr's just give you a "diagnosis" and a pill and send you out the door. I had problems for 6 months before I saw a GI. I was in the ER twice a week on average by that time and had lost over 65 pounds. The GI did a colonoscopy (?) and decided that because of my heritage, that I needed to go on a gluten free diet. He did a blood test, but there aren't any results of this test. (go figure) I've been dedicated to this diet for 4 years and it's made me feel better. I cheated on it for the first 6 months, and was literally dying in front of my husband's eyes. I still have some problems, especially with catching every single virus that comes into my home, but I'm getting better. There are a lot of family members that need to be tested, and a lot of deaths that celiac could have had a hand in, some in my family are still unwilling to be tested. No amount of literature and talking can change their minds. I thought about getting a biopsy done and the gene test, but why go through all the turmoil when I think I know the answer already?

[Mme]

Wow!

I’ve been on and offline with the fever but coming to the replies to this thread made me so happy!!!

Annette: Thank you for the safe space and also the Dx through diet inspiration and example. The diagnostics are so tricky, especially with all of us so different in our immune systems and the immune system so good at compensating. Although “the body knows” is a hard principle for western medicine, it’s really important! Also, because this is genetic, we do want to make sure others are safe or at least tested! I felt like I had a responsibility to go through this process as the first living member of my family to be symptomatic and near a good research center. It *is* frustrating to get sick doing so but wanting to know for other people's safety as well as your own.

Nini: Your post reminds me of the courage of everyone who has had to face these questions with little support and so much riding on the outcome. I’m sorry you had to go through so much for your certainty but your example is an inspiration. And I’m so glad that you are okay and that your daughter is okay now. It’s just amazing to deal with something that is literally a silent killer that medical professionals refuse to recognize in its (frequently) atypical varieties. I’m hoping that the ability of communities to help people and to respond to the questions “Is anyone else like me?” will help save more people. In my case, I was immensely helped by reading this forum’s archives, including your posts, after I couldn’t find any information on celiac and being overweight or constipated or just atypical. My grandmother, to the day she died, did not have celiac diarrhea or a celiac diagnosis and yet she certainly had celiac cancer and celiac health problems.

.

Carla B: Thanks for the club membership and camaraderie! I know making ourselves sick for tests and having a difficult diagnostic process is a funny thing to have in common, but it’s sooo comforting to know one is not alone. I really like how inclusive this community is and that it *doesn’t* exclude people who don’t show up on tests.

Yes! The rash! They never know what to do if you don’t have it at the moment but then, when you do, they can’t figure it out. It’s so important that our bodies show signs of needing help but it’s really hard for doctors to integrate things into a system. They’ve been actively taught not to often.

Pauline: I have been thinking about the Enterolab options for genetics. Also, my mom and I are creating a family history of illness and health. We’re now sure that my dad’s side has clear “celiac-type” issues with all gluten and that her side has problems with wheat allergies. I’m interested to see if we are a genetic subtype or just a combination of traits that cloak each other. Celiac of the future? Thanks very much for the encouragement and commiseration.

Jennifer: It’s so hard to feel in control of your healthcare regardless of the system. I’m so glad you had a GI who would put you on the diet. The conclusion I’m beginning to draw is that for people who get severe reactions suddenly it can be more lethal to try and wait for diagnosis. My dad started eating rice and potatoes and yoghurt because he was having awful GI symptoms this year. He’s currently out of the country, so he doesn’t have easy access to specialists. When I told him what I had found out about our family history and celiac/atypical autoimmune gluten intolerance, I told him he might want to get tested. His attitude was, if we know we’re sick and diet makes us better, if all signs point overwhelmingly in that direction, isn’t that enough? I think being sure yourself is enough, especially given the side effects and misdiagnoses. And I hope your family will take steps to look out for their own health, even if they won’t go to a doctor to get tested. I’m trying to get my siblings and cousins to eat seriously gluten-free for two weeks and just see if they feel any different.

Thank you all so much!

Liz

[lonewolf]

I'm just seeing this today. Welcome Liz! Now there are two of us! I've never been officially diagnosed either, but won't EVER go back to gluten again. I've had more than my share of doctors blow me off and basically tell me I needed psychatric help. With the help of 2 naturopaths I figured out I couldn't eat wheat, but even they didn't catch the celiac/gluten problem. I figured it out and am quite happy with my own diagnosis.

[marlene57]

Thank you, thank you, thank you all for this post and replies!

I've suffered for years with constipation and pain. Every doctor said the same thing - "eat more whole grains". Now I think I've eaten so much Shredded Wheat, 12 grain breads, and whole wheats, that I've made myself very ill.

It was when I decided to search the internet for reasons for my abdominal pain, that I found out about celiac disease. I was shocked to see that celiac disease could be the cause of my B12 and Folic Acid deficiencies, and could even be linked to the mysterious, very itchy rash that I have!

Why don't the doctors see these links? Is it because I'm overweight and suffer from constipation?

I was so disappointed today when my blood test came back negative for celiac disease. I was hoping that this was the answer. Now that I've read your messages, I know I have to stay gluten free and prove it to myself. I also don't feel like a hypocondriac anymore.

Thanks again,

Marlene

[ravenwoodglass]

Thank you, thank you, thank you all for this post and replies!

I've suffered for years with constipation and pain. Every doctor said the same thing - "eat more whole grains". Now I think I've eaten so much Shredded Wheat, 12 grain breads, and whole wheats, that I've made myself very ill.

It was when I decided to search the internet for reasons for my abdominal pain, that I found out about celiac disease. I was shocked to see that celiac disease could be the cause of my B12 and Folic Acid deficiencies, and could even be linked to the mysterious, very itchy rash that I have!

Why don't the doctors see these links? Is it because I'm overweight and suffer from constipation?

I was so disappointed today when my blood test came back negative for celiac disease. I was hoping that this was the answer. Now that I've read your messages, I know I have to stay gluten free and prove it to myself. I also don't feel like a hypocondriac anymore.

Thanks again,

Marlene

Hi Marlene and welcome. Isn't everyone on this board great? I showed negative on the blood tests but the dietary response from gluten-free has been incredible. For many very sick years I got the eat more grains stuff too, and the here have a prozac. It is so nice to know we are not alone.

[Matilda]

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[AnitaV]

Wow.

I'm not diagnosed but I will stay off the gluten.

The changes in my personality and muscle tone are remarkable.

If you are better without gluten, that would do it for me. Who really WANTS to make themselves sick?

[Matilda]

..

[Mme]

Yay! Another Liz! And yes, so much in common Also, I must admit, you have one of my favorite quotes. I noticed it when I first came on board and then, after I had my own little revelations about how much better I felt without gluten, I understood it in a new light.

Psychiatric misdiagnoses seem to be so common with celiac. The problem is, living beings under constant immune stress have extra twitchy nerves and need special care. This is not the same as anxiety disorders, although the organic conditions can cause lots of depression, anxiety, and other problems. But ANYONE can feel crazy when they're sick, vulnerable, and noone can find a good cause. I'm really glad you had the naturopaths to start you on your way. Bless the naturopaths, nurses, healers, and just wise people of this world, as well as the doctors and specialists.

Marlene57: I am so glad you found this place too! I found it by looking for people who had celiac and were *not* underweight. I have had difficult weight swings and food cravings since I was 5. They're unfortunately common in my family. But I knew my grandmother and I have almost the same chemistry, and my mother and I put together her celiac signs, so I decided it had to be possible to be celiac without appearing undernourished. This community was the first proof I had and then my own response to the gluten free diet was the second.

The blood test results... yeah. Pissed me off. Totally. But every test is possible way to diagnose, not the only way. As Annette pointed out earlier, there are over 200 symptoms. Every body is different. You know yours. And if you don't take care of it, who will? So good for you and keep telling us about it!

Matilda: thank you and I understand periods of stroppiness. I certainly go through my own. It was restorative to think through my arguments and realize I didn't really blame my doctors so much as the situation we were all in with this. And that I did know what to do, after all.

AnitaV: I totally agree. If it makes you better, it makes you better. Positive personality changes are a strong argument. I've heard that some people feel the effect more in emotional/cognitive ways than others. Also muscle tone! Rather important part of life and health. I don't think anyone is frivolous for taking their health and well-being seriously and I really don't think one could eat gluten free for long without a good reason to do so. Maybe it's just beginner's anxiety, but, well, it's not the *easiest* possible food intolerance to have, is it? That being said, it is seems so worth it. I'm just so thankful my airways are clear today. Breathing is a lovely thing.

I think it's good to try, if you can afford to physically, emotionally, and financially, to diagnose before going gluten-free. But if it involves being or making yourself ill, no. Just not. I wish they had tests that worked when you weren't eating gluten. It seems crazy to say "Here, hurt yourself a little more and we'll see if our tests can find it!"

I was hoping, personally, that I could stay on gluten long enough to get all of my tests done. My big mistake was overglutening for the bloodtest, getting a reaction (but no positive results), stopping gluten while I was sick for a few days, and then trying to go back. My immune system isn't having it now. The seesawing is too much. Then again, I feel so much better when I don't eat it, somehow the importance of a clear result on a small bowel biopsy feels less concrete. So maybe that's the payoff?

[Matilda]

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[Mme]

Matilda, you're marvelous! I've been glowing about having a "fabulous attitude" and have been severely cheered up by your comment, I'll have you know!

I hadn't known about the Enterolab testing until I saw it on this board. I suspect all of my family on both sides is pretty genetically susceptible, but I'd like to put it to the test.

How did you know to do the Enterolab diagnostics?

I think I'm going to keep after the celiac center here. Not forever but maybe a bit longer. The reminder about biopsies with and without gluten is very good. They are still worth something. I suspect my father has enough damage that he'll show for a while, even though he's been off gluten since March. I may frogmarch him into the doctor's when he visits in June, if only for MY own interests. >insert evil cackle<