Very Confused...

[ellie-kate]

Hi Everyone,

Well to start off with..im 19 years old and live in Sydney Australia. i'm so confused at the moment, have had symptoms such as alternating D and C, anemia, being lathargic & cranky, rumbly stomach, eczma, cramps and no appetite at all for several years now. I went to one doctor about 9 months ago, he felt my stomach and goes "Yep looks like you have irratable bowel syndrome, here's an information sheet to look at..not much we can do unfortunately". So after the pain was increasingly worst over the next months, 2 weeks ago I decided to go to another doctor who did lots of blood tests and then referred me to a specialist to have a camera down my throat through my stomach and to my intestines to do biopsies to determine whether I have celiac.

So I went home and rang the specialist to book an appointment and the earliest booking is in 6 weeks! and thats just the appointment, i have to get the test done at a later date...so now i've been trying to be gluten free for the last week or so because the pain is pretty bad, but am worried that the test result will be negative just because i've been gluten free. I need some advice about whether my symptoms match up to celiac, should i be going gluten free or should i put up with the pain for the next few months so that the test result is accurate?

Your advice would be much appreciated!

[tom]

Hi Ellie_kate,

It's a tough call. It certainly *could* be celiac. I don't know anything about what else it could be.

Except that it IS something.

That 'call it a syndrome' Dr's attitude is bs. (Preachin' to the choir huh?)

There's another recent thread discussing a very similar situation. Have u seen it?

Part of that thread is that many Drs will use "vast improvement on gluten-free diet" as a test result, instead of just an anecdote.

I believe they all should think this way.

Good luck - wish I could be of some real help.

[Emily Elizabeth]

I would definitely say that you should put up with the pain for a little while longer if you can. I read a book on celiac disease and it said that in order to ensure your test results are accurate, you should have at least the equivalent of 4 slices of bread a day for 2 months. Nothing would be worse then your tests being falsely negative and you having to go another 2 months to find out if they were accurate or not.

If I were you, I would begin learning the gluten diet though. This way, when/if you are diagnosed, you would have a good idea of what the diet entails and what in your kitchen you need to give away. If you bake, start cleaning your kitchen of all loose flour (rolling pins, cook books, etc), check your sauces and condiments for gluten, even check your lipstick and chapstick. This way, you will be confident of the gluten free diet when/if you do need to start. I think the hardest part for me was learning what I could and couldn't eat. It seemed to take forever. I also found out later that my lipstick had wheat bran in it! The book I read says even 1/8 tsp a day is enough to keep you sick. So it's pretty overwhelming trying to make sure it is eliminated from your diet.

If you know the diet well though, you could probably start feeling better quicker then most of us who eat gluten unknowingly for weeks before we finally figure out everything that we can't have. On a side note, I would not recommend eating supposedly gluten free cereals in the beginning. I was eating Puffins and Mesa Sunrise and couldn't seem to get rid of my symptoms. When I stopped, I felt 10 times better! Others on the board said that they think these products are contaminated with gluten since they are not made in dedicated facilities. I have a cereal recipe if you are diagnosed and are looking for a healthy cereal that is definitely gluten free. Just let me know! Good luck!

should i be going gluten free or should i put up with the pain for the next few months so that the test result is accurate?

Your advice would be much appreciated!

[ellie-kate]

Thanks tom and emily for all your advice!

I think i will be going full on gluten until the test because i want to know for sure...im not sure i could be satisfied being diagnosed by success of the gluten free diet alone, i want the test to rule out anything else.

Emily i have already got your recipe for cereal, it sounds absolutely delicious! would you mind telling me which thread it was in? i saved the recipe to my work computer but i wanted to make it this weekend I was also wondering what book you were reading? I've been looking at a few but they're mostly recipes for things i'd never eat anyway lol, i was looking for a more general overview of celiac and the diet.

Thanks again!

[tom]

I would definitely say that you should put up with the pain for a little while longer if you can. I read a book on celiac disease and it said that in order to ensure your test results are accurate, you should have at least the equivalent of 4 slices of bread a day for 2 months.

Whoa whoa whoa!!

That is extreme overkill!

I'm curious about what book would say such a thing and when it was written.

This isn't some sort of IMHO from me either.

I saw Stanford's Head of Gastroenterology, Dr. Gary Gray, (who's also the top medical advisor for our counterpart, Celiac. org), and he wanted me to have HALF of ONE slice of bread for ONE month.

Also, I need to make clear that there is more to it than "putting up w/ the pain".

If the gluten eating is one month, maybe my next point means less, but it looked like the actual test may be several months out.

Continued ingestion of gluten, if u DO have celiac, can affect every system in the body. Skeletal issues - bone pain & degradation leading to osteoporosis etc, peripheral neuropathy & other nervous system issues, mental health, more GI problems like leaky-gut and candida overgrowth and all of THEIR symptoms, ataxia, etc etc are possible w/ long-term continued exposure.

Perhaps one option to consider is to see what effects being gluten-free has, while waiting for the appts. THEN if needed, and you're still willing to, go back on gluten for just the 30 days prior to the test.

I VERY highly doubt Stanford's Head of Gastro was misinformed w/ his "1/2 slice/day for 30 days" will be enough gluten.

Sorry if I appear to have gotten a bit carried away. That happens these days since my brain 'woke up' and started whirring again at max efficiency in early June. :)

[jerseyangel]

I think it depends on which expert you are talking about when it comes to how much gluten and for how long to consume for a gluten challenge.

Dr. Peter Green, in his book "Celiac Disease A Hidden Epidemic" says that "there is no standard for what a gluten challenge involves".

He goes on to say that "we arbitrarily use a standard set by Michael Marsh, MD from England, and a long standing expert in Celiac Disease and say that a gluten challenge consists of eating about four slices of bread/day for a month".

He goes on to say that if the person is tolerating this well, he would prefer they remain on gluten for at least three months before having a biopsy.

If asked, I tell people that a good rule of thumb is 3-4 slices of bread a day for 3-4 months. Whether they choose to/are able to do this is of course up to them.

[Karen B.]

Maybe this will help (emphasis added)...

How long must gluten be taken for the serological tests to be meaningful?**

Vijay Kumar, M.D., Research Associate Professor at the University of Buffalo and President and Director of IMMCO Diagnostics: There is no simple answer to this question as the susceptibility of the patient to developing celiac disease is dependent upon several factors. One factor is the amount of gluten intake. Another is the genetic makeup of the individual. However, we feel that several weeks of gluten intake, especially in doses of 2 gm gluten/day, should result in positive serology in patients with celiac disease.

Karoly Horvath, M.D., Ph.D., Associate Professor of Pediatrics; Director, Peds GI & Nutrition Laboratory; University of Maryland at Baltimore: The result of serological tests depends on the diet. Generally, three to six months of a gluten-free diet may result in normal antibody levels in a new patient. A strict gluten-free diet for more than three months may result in inconclusive serological tests in patients, who have started a diet without any diagnostic test. In this case a gluten challenge should be introduced for a proper diagnosis.

Each patient has different sensitivity to gluten for reasons that are unclear. The period of gluten challenge and the amount of gluten necessary to provoke serological immune response are individually different.

A 0.3 g/kg body weight/day of single gluten challenge causes immunological changes (cellular immunity) in the intestine (J Pediatr Gastroenterol Nutr 1989; 9:176-180) in patients on a gluten-free diet, however, the serological response is much slower.

Our recommendation is to ingest at least 0.3 g/kg/day of gluten for two months prior to the serological tests. However, if somebody experiences symptoms during the gluten challenge we recommend to perform serological tests earlier.

The protein content of wheat flour is between 7-15% and approximately 90% of the protein content is gluten. That means a slice of bread may have 2-3 g of gluten.

https://www.celiac.com/st_prod.html?p_prodi...-37107342556.79

[Emily Elizabeth]

The book I read was "Celiac Disease: A Hidden Epidemic" by Peter H.R. Green & Rory Jones. It has a copyright of 2006. I definitely don't want to post incorrect information. I thought this book was pretty legit though. Please let me know if it's outdated and if there is another one that is recommended. I would love to learn the truth about all of this!

Whoa whoa whoa!!

That is extreme overkill!

I'm curious about what book would say such a thing and when it was written.

[jerseyangel]

The book I read was "Celiac Disease: A Hidden Epidemic" by Peter H.R. Green & Rory Jones. It has a copyright of 2006. I definitely don't want to post incorrect information. I thought this book was pretty legit though. Please let me know if it's outdated and if there is another one that is recommended. I would love to learn the truth about all of this!

See my post above

[Emily Elizabeth]

Thanks! I didn't see your post before. I'm glad I'm not crazy. I thought it was a legitimate book. Thanks again.

See my post above

[Emily Elizabeth]

Ellie Kate, The book I read was "Celiac Disease: A Hidden Epidemic" by Peter H.R. Green & Rory Jones. I enjoyed it. It made me feel like I could at least understand the disease a little better. Here is my recipe:

Emily's Heart Healthy Granola Cereal

1 Cup - Any mixture of the following to make 1 cup - Rice Flakes, Quinoa Flakes, Flax Meal, Polenta (Corn Grits), Ground Rice (You can grind regular uncooked rice in a blender or food processor)

1/4 Cup - Flax Seeds

1/4 Cup - Quinoa (uncooked)

1/4 Cup - Nuts (I use flaked Almonds and chopped walnuts)

1 tbsp - Cinnamon

2 tbsp - Honey

1 - egg white (1 whole egg is fine too)

Optional:

1 tsp - Vanilla Extract (gluten-free of course)

2 tbsp - Rice Bran (for added fiber!)

3 tbsp

[confusedks]

EllieKate,

The only thing that I would have to say is do YOU want a diagnosis? I went gluten free and now am stuck without a formal diagnosis. I started a thread kind of about this. Here's the link... click here

The suggestion I would make to you would be stay on gluten, but that's just IMO. It's really up to you, but as you'll see an official diagnosis is really important to me.

Good luck!

Kassandra

P.S. If you ever want to talk, im 17 and I actually lived in NZ for awhile (I know, I know...it's not Australia, but they are close to each other! lol... you can email me knshore@hotmail.com or PM me)

[Belinda Meeker]

hey guys this maybe a shot in the dark but it gave me my answer....

For several years I was a junk food junkie and lived on pizza rolls the main brand (Totino's)

and I always suffered from itchy blisters on my feet and hands not knowing wht caused it and always got them around summer time (the time I ate more of them) thinking it was poison or my shoes doing it or a lotion.

Well to make a long story short I quit eating them cuz they also gave me severe D,

So when my hubby started with same symptoms we did the gluten challenge and I tried pizza rolls again cuz the say "GLUTEN" right on the package and low and behold the DH (blisters) were back full blown and dr. said yes to DH and to have DH u also have celiac disease so....

Maybe u could do a somple test like this one to see if it is ur answer I too had to have an answer for me, so I wouldn't be so tired and D all the time was too imberrassing

I'm not sure, but u might just want to do gene testing like we r and not even put urself thru this awful stuff, we were told to do gene test can be gluten-free

SO GOOD LUCK !!!!!

If I were u I wouldn't wait for the testing cuz u can do more damage to urself waiting on the non-knowing-doc's in this desease

Belinda