Does Everyone Have Testing Before Trying Diet?

[elmuyloco5]

Hello....new here

I believe that myself, my husband, and my three kids might be Celiac or at least gluten sensitive. I really don't want to spend a ton of money getting all of us tested, so we thought we would try out the diet instead. Has anyone else done without testing? I guess I figured, things wouldn't show up positive anyway (like every other test I've had to figure out what's wrong).

I never would have thought that we were even affected by gluten until I ran across something about the DH rash and looked at pics of it. I swear that my daughter and I have it. But when I started reading about Celiac and gluten sensitivity, almost everything that any of us have ever complained about can be caused by it (not that they can't be caused by other things too....but it just made me wonder if there was more of a connection between it all).

Our symptoms:

My youngest boy (6): excessive gassiness, asthma, reflux (Really bad when he was young, although we were able to talk the docs out of surgery. He doesn't take meds now unless he has a bad day).

My daughter (7): excema, keraticonus pilaris (another skin condition), and I believe DH as well, knee pain.

My oldest boy (9): excessive gassiness, very hyper, big mood and attitude change at age of 5, fights alot with siblings, etc, he also has "growing pains" which I read could be related.

Husband: excessive gassiness (really bad ), constant sinus issues, diarrhea, bloating, snoring, sleep problems (tired all the time), joint pain, lower back pain, headaches, excessive weight gain that won't come off with diet and exercise.

Mine: diagnosed with IBS, Chronic Fatigue, Interstitial Cystitis, asthma, gassiness, bloating, diarrhea(stool has the oily smell), I believe I also have DH, joint pain, excema, constant UTIs, lower back pain, get really sick after eating spaghetti (always thought it was the tomato sauce), tingling and numbness in extremities not relieved with carpal tunnel surgery, sinus issues, chronic migraines, excessive weight gain that won't come off with diet and exercise, and just plain ole crummy feeling.

What do you all think? I've been poked and prodded for years now. Every doc keeps saying something is wrong with my thyroid gland, but the tests come out ok. They've thought it was lupus, a pituitary gland tumor, and now the "popular answer" is possible Polycystic Ovarian Disease (but tests say it's not). We've spent so much money on doctors over the last decade, I just can't justify doing it anymore.

I'm praying this works out. We've been reading up like crazy and I've gotten rid of everything in the house that has gluten in it. We've bought some new foods and everytime my husband's off work, we go out looking again (we live in a tiny town and have to drive about 2 hours to get to the city we can look around in). We've only been on the diet for a day, but I can say the gassiness has greatly subsided.

[Jestgar]

I didn't do testing. Someone suggested gluten to me, I stopped eating it, felt amazing, and never looked back.

[Ursa Major]

I haven't done testing, either. After doctors treated me like a hypochondriac for fifty years and feeling rotten, I eliminated gluten and it is obvious that I am intolerant to it. I get the obvious symptoms now when I get glutened by mistake.

You are right in thinking that every one of the symptoms you and your family display could be caused by gluten. I hope it is your answer, and you and your family are ending up healthier and happier within a short while. That the gassiness is improving is already a good sign.

[Worriedtodeath]

We have one child put thru the ringer with testing and everything has come back normal. The other kids had the blood test done and it was not positive but they did have raised antibodies. So the kids and I went gluten free because we had to do something to save the baby as she was getting progressily worse on wheat (long story but food trials helped pinpoint this) Almost 3 weeks into the diet and many things have cleared up all ready like joint pain, stiffness , fatigue, and gassiness.

IF you are worried about doing another round of testing, then give the diet a try for 6 months. You may have to take out dairy as we have discovered that caused many of the same stomach upsets. This website and the talk about curing autsim site give great advise and examples of what to eat, avoid, and how to do the diet Open Original Shared Link

Trying it won't hurt and no dairy or wheat won't hurt you either. My 10.5 year old won't go back on gluten at all after eating an oreo and now he says he never realized how bad he felt before going gluten free.

Good luck

Stacie

[salamander]

I went through testing and it seemed to be inconclusive, but my doctor said that might be because I was already restricting my diet because I knew what was wrong. Since going gluten free i've felt much better and to be honest it's only now that i realise just how bad i felt before.

Cut out the gluten for a few months and see how it goes. Listen to your body and if you start to feel better and the symptoms that you listed clear up you know why.

and good luck!

[lizard00]

I did an elimination diet on my own after a year and half of constant headaches and fatigue that got steadily worse. The LAST thing I thought would bother me would be gluten products and wouldn't you know, it was the cuprit. I went to my GP and had them do a Celiac panel, but by then I had been gluten-free for a month and the test came back negative. At this point, I feel SOOOO much better I refuse to have to eat gluten for the 1-3 months it would require to do another test. I may never know if I truly have Celiac or not, but at this point it doesn't matter to me. There are other symptoms that I had that I never related to Celiac until just recently, because they have so far been either eased up or cleared up by going gluten-free. It's for those reasons I am leaning more toward Celiac than an allergy. I feel very fortunate that I realized what was going on as quickly as I did.

If you don't want to be poked and prodded (neither do I), then don't. Simple as that. It's your body, try the diet, if it works, there's your answer.

Hope it you find some release!!

[elmuyloco5]

I'm so glad to hear that others just try the diet. I really feel this may be our answer.....and I so hope it is. It's amazing to me just how much gluten can do to your body! How would you be able to tell if your actually are Celiac positive with the diet vs. being only sensitive. Is it because of the degree of your symptoms? I'm a little fuzzy on that part. Have you ever had any problems with doctors after you figured out that you have this sensitivity/disease? I just worry about my kids in the future needing medicine for something and needing to request that their meds have no wheat in them, and the doctor won't do it because they haven't been "tested" for it. Do you find that your doctors just listen to you?

[RiceGuy]

Add me to the list of those who just tried the diet, and got the answer. And like others, I thought wheat was the last thing it could be, and the last thing I wanted to give up (I was eating a pound of pasta + more than half a loaf of bread every day).

Doctors steered me wrong since childhood, so I had already given up on them years earlier anyway. As far as I'm concerned, I don't need nor desire any tests. The diet is the ultimate test IMO. Sure beats a piece of paper from some doc.

Echoing others; try the diet, and get your answer. Nothing to lose except health problems!

[Ursa Major]

I'm so glad to hear that others just try the diet. I really feel this may be our answer.....and I so hope it is. It's amazing to me just how much gluten can do to your body! How would you be able to tell if your actually are Celiac positive with the diet vs. being only sensitive. Is it because of the degree of your symptoms? I'm a little fuzzy on that part. Have you ever had any problems with doctors after you figured out that you have this sensitivity/disease? I just worry about my kids in the future needing medicine for something and needing to request that their meds have no wheat in them, and the doctor won't do it because they haven't been "tested" for it. Do you find that your doctors just listen to you?

It is irrelevant if you call it celiac disease or gluten sensitivity. Many doctors and scientists want the distinction removed. Celiac disease (the official explanation for it) with villi damage is just ONE manifestation of gluten intolerance. Everybody who is intolerant will react to it in a slightly different way. It seems that in the end, everybody will end up with intestinal damage, given time, and the last stage is usually cancer somewhere in the digestive system, and dying about 20 years ahead of your time (in your sixties or seventies rather than eighties or nineties, rarely earlier).

Any doctor who won't believe you and honour your commitment to have you and your family gluten-free will deserve to be ditched immediately and replaced by a doctor who understands about gluten intolerance, or is at least willing to learn. You can't worry about that now.

Fortunately my doctor agrees that I have celiac disease (even though she was too ignorant to test for it, because I was gaining, rather than losing, weight).

[AliB]

I have been suffering for 35 years (since I was 15) with vague symptoms (constant fatigue, IBS, etc.) that I now know must have been caused by gluten intolerance. I knew I was intolerant of Dairy and had tried losing that but was only partially successful. I had also tried losing the wheat but that didn't work either.

For the last 6 months I have had a very painful stomach, initially caused, I thought by a drug the doctor put me on for my Diabetes (contracted 10 years ago) as side effects were stomach problems. Going back on insulin didn't make any difference and the stomach got worse, terrible pain on eating that would not get better. Finally, 2 weeks ago I suddenly got pale, floaty stools. Thinking i had a blocked gall-bladder I went to the hospital only for the Ultrasound to reveal nothing, no gall-stones, zilch! By then it had degenerated to liquid diarrhea.

frustrated I started researching in earnest and came up with Coeliac as a possible fit. The more I read about it the more the pieces fell into the puzzle. A Mum with Type 1 Diabetes, who was anemic all her life, had 10 miscarriages and finally had a tentative diagnosis of Celiac 5 weeks before she died! I had forgotten about that as it seemed pretty insignificant at the time, but it makes perfect sense now. That would make it almost positive that that has been my problem and although it was fairly low-level, manifesting only as intolerance for those 35 years, it looks like I am now having to deal with the real McCoy!

As soon as the surgery was open last Monday I was down for a blood test. Immediately after I went off to gather the gluten-free. Although the stomach is still tender and gets bloated, within a few hours the pain had stopped and so had the diarrhea. Bliss. I still have a way to go and may end up forgoing the biopsy, as the thought of having to go back on the gluten again is more than I can cope with at the moment. Why make people go through this medieval torture one moment longer than is necessary???

If your whole family is reaping the benefit then whether it is gluten intolerance or Celiac, who cares? Why on earth can't they use the fact that losing the gluten is enough proof that it works? As someone said the other day, you don't have to give someone a peanut in order to find out if they are,allergic and you wouldn't need to do a biopsy either. One reaction is accepted as proof enough. Hopefully they will eventually come up with a test that will replace the torture. Meanwhile, I'm following this road and I shan't be stepping off it anytime soon!

[jeanbean]

I tested postive for celiac on the blood test in December, and immediately began a gluten-free diet. I'm having a huge problem with ingesting gluten for the sole purpose of proving to a gastroenterologist that I have this, when it's already been proven. My GP says it's to test for anything else that could be wrong and it's the golden standard for confirmation of diagnosis. Well you can be sure that while I'm waiting for 4 months for my scope scheduled in May, I won't be thinking about ingesting any gluten any time soon. I haven't felt this good in years - every symptom I had has literally disappeared and I feel great.

The only satisfaction in getting tested I guess is knowing for sure what you have and that no one can ever question you again. Some people need that "documentation" and others don't. Others are happy with self diagnosis. For me, I had every test done including a colonoscopy and ultrasound because I wanted to make sure there was nothing else wrong.

It's irrelevant for me what the scope comes back as in May because I already have my answer. I don't even want to do it but my doctor says it's necessary. Why can't it be my decision?

[loco-ladi]

**~~**raises hand**~~**

Diet only here as well, however I do have a couple things to add...

My youngest boy (6): asthma

I had a foster child once and the research I found was that pasturized dairy products can increase the symptoms and also to add extra magnesium to the diet, well unless you think you can get him to eat more lettuce and spinach that is, lol

Also would add if anyone were to be tested in your family, by the length of the list I would say start with yourself

[ravenwoodglass]

I trusted the blood tests for many years, as did my doctors. They were less than worthless in my case. I would be dead now if I had kept waiting for my bloodwork to show positive. I was finally diagnosed when I went to an allergist and he put me on an elimination diet. He saved my life, literally. In my case, and I am not alone, dietary exclusion was the only way for me to get diagnosed. My GI never even thought of it, he did a colonscope and pronounced me to have the worst case of diverticulosis he had ever seen and IBS but he never did an endo because my problem was D so it had to be related to the large intestine, yea right....... He diagnosed me after the allergist sent me back to him for confirmation and his ordered gluten challenge almost killed me. Fast forward 5 years and a bout of diverticulitis sent me back. This time he did both ends, won't go into the nightmare that was but on inspection of my large intestine he found most of my diverticuli were gone, disappeared not there anymore. Hmmmmm but of course they weren't related to the celiac.

Oh and this GI and many others I suspect, had no idea that celiac can effect the brain, nervous system, joints, skin and muscles. Some of my other health problems and the 'link' between brain and gut contributed greatly to my IBS diagnosis and the repeated tossing of antidepressants and tranquilizers, he even snuck valium into a script without telling me since everything was 'in my head' and I must be depressed and that was causing my D. What a clueless doctor he was. The only good thing he did was to tell my DD after her biopsy that she was showing celiac related changes and that she should follow the diet unless she wanted to end up like me.

Long story short, your body knows the answer as to whether you need the diet much better than a doctor does. Listen to it and give the diet a good shot after you are done with all the testing that YOU decide is needed.

[jeanbean]

Thanks Ravenwoodglass. Turns out that once my gastro specialist found out I was already on gluten-free diet she moved up my scope to this Friday! (cancellation I guess). I'll go this one time because I may still show signs of damage.

If there's one thing I've learned so far is that doctors from old school way of learning like mine really think Celiac is uncommon and so they never link the symptoms and what they might mean. I've concluded they do this because on a balance of probabilities, a patient is far more likely to have IBS that celiac so they just don't think of it.

Your absolutely right, we know our bodies better than any doctor. Now if we could just get half of their pay for all the research we do.....

By the way, is there any connection between asthma and celiac? My daughter has asthma and she shows some signs of problems like constipation. I think I will test her on the gluten-free diet to see if I notice any change.

[ravenwoodglass]

I've concluded they do this because on a balance of probabilities, a patient is far more likely to have IBS that celiac so they just don't think of it.

I agree completely with everything except the probability of IBS, IBS is a syndrome, that means the doctors don't know what causes it. IMHO there really is no such thing as IBS, just clueless doctors who would rather throw meds than help folks find the cause. I am glad you were able to move up the biopsy, please be sure to do the diet strictly after it is done and go by your reaction to the diet. Your body may very well have the given you the answer before you sit down to review the results.

[Nancym]

I went gluten-free first, then did testing from Enterolab.com. I think the only way you can go wrong with trying the diet first is to try to get tested later, test negative, and then decide that you don't need to be gluten-free even with positive dietary outcomes. So just take your dietary trial as serious as if you had had the invasive testing procedures and follow the diet just as strictly, based upon your test. Then I think you'll be just fine!

I think men in particular have a hard time adjusting to the gluten-free reality of themselves and their kids without some authority figure telling them they must. For some reason, wives don't count as authority figures. So good luck with the husband!

[sweet butterfly]

I haven't done testing, either. After doctors treated me like a hypochondriac for fifty years and feeling rotten, I eliminated gluten and it is obvious that I am intolerant to it. I get the obvious symptoms now when I get glutened by mistake.

You are right in thinking that every one of the symptoms you and your family display could be caused by gluten. I hope it is your answer, and you and your family are ending up healthier and happier within a short while. That the gassiness is improving is already a good sign.

I have been trying out various protocols for times when I get "glutened by mistake." When it happens to me, I get immediate brain fog and depression and dark circles under my eyes for a while.

I suspect that the immediate reaction might have something to do with histamine/allergic reaction. I mean, the effects of malabsorption probably wouldn't show up for at least a few hours, I would think; but an allergic response could show up quickly. And histamine/allergy can cause dark circles under the eyes.

I have not been tested at all yet, and I've been following a mostly gluten-free diet for 6 months with good results, and started a much stricter gluten-free diet 2 months ago (once I found out how many non-obvious ingredients can contain gluten), and doing much better except for occasional mishaps.

I've found that if I get glutened, it's usually improved if I take fish oil, B6 (anti-histamine), and St. John's wort.

My question:

-I am recently out of college and without an insurance-giving job, so all I have is high-deductible insurance. But I want to be tested for malabsorption, bone density, and anything else that's important to find out about things besides the gluten-free diet that are important to do if you are newly diagnosed as gluten-sensitive/celiac.

What tests should I do? If I am vitamin deficient, etc., I'd rather address that now than wait half a year until I have insurance ....