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Help - I Need Advice!

Marcydawns

By Marcydawns
in Coping with Celiac Disease

Recommended Posts

Marcydawns Newbie
Marcydawns
Posted

Good Morning All,

I am looking for advice, I am not sure what to do. I have never been diagnosed with Celiac. Two years ago my doctor at the time only tested me for IGA and IGG antibodies. The IGG came extremely positive. She immediately put me on a Gluten Free diet. By the time I made it to the Gastroenterologist and got the real blood tests and the endoscopy nothing showed up positive.

I have been on a Gluten free diet for two years even though I never knew whether it was just a sensitivity or Celiac.

I now have a new doctor. She looked at my old labs and told me that a lot of times, my test shows false negatives. We discussed liberating my diet for 30 days. Well so far I have liberated it for 4 days.... Day 1 I was ok (surprisingly) Day 2 I had a migraine that lasted for 18 hours. Day 3 I started to become really short tempered and nasty.

I am not experiencing any major stomach problems except I have also had heartburn for the past 3 days. I am surprised at this, but my Doctor also just put me on a heavy duty prescription iron because my saturation was dangerously low (4%) and b-12 because I was also deficient. I am wondering if the iron is countering the stomach issue?

Anyway...my question is: I feel horrible, I have heartburn, I am short tempered and snappy... although no longer I migraine I still have a dull pain behind the eyes. I am not sure if it is worth it to keep eating gluten for the next 26 days... but I also have the issue that we NEVER figured out the true cause....

What would you do?

Thank you everyone in advance for reading this and listening to me.

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ravenwoodglass Mentor
ravenwoodglass
Posted

I would keep a careful record of the symptoms and call your doctor regularly to fill him in. Your progression is a common one and I would not be surprised if the D hits with the next day or so. What you are doing is a gluten challenge. If this was ordered by an allergist type doctor they would tell you to stop when symptoms got severe. Your doctor wants to continue the challenge until enough damage can be done so you show postive on a biopsy. 26 days may not be long enough for that to happen. It is generally considered to take closer to 3 months. Whether you want to continue to that point is up to you. The treatment for celiac or 'gluten sensitivity' is the same, strict adherence to the diet. Just because someone is 'just' sensitive does not mean that they can 'cheat' on the diet or that serious damage can't be done to other body systems.

cat3883 Explorer
cat3883
Posted

I would stop eating gluten. Call you GI and tell her how you are feeling. It's proof you have problems. If she gives you a hard time ask her to eat poison for 30 days and let you know how she feels.

Takala Enthusiast
Takala
Posted

I would liberate my pocketbook from paying for this doctor's next round of golf.

<_<

I just ate two pieces of homemade gluten-free sorghum amaranth almond toast, cherry jam, a piece of dark chocolate on top, a mini tangerine, half an apple, and some imported irish hard cheese, with some coffee with coconut milk, and you know, I just feel so.... so.... uh, .... not deprived.

The tragedy of eating real food. Oh, the sacrifices we have to make for the cause.

MELINE Enthusiast
MELINE
Posted

Hey 30 days are not enough after 2 years gluten free!!!!!!!!!!!!!!!!!!!!!!!!!!

read this!!!

How long do I need to be eating gluten before I am tested for celiac disease?

This is not an easy question to answer. Most people believe, or are told that they need to eat gluten for a few days (or up to a week) before a blood test or a biopsy, and this is incorrect. The true answer depends on how long the individual has been avoiding gluten. How much gluten to eat depends on the age of the individual who is being tested. The information provided here is a general rule, there are many specifics that come into play, so its best to talk with a knowledgable physician about your particular situation.

First: If a patient has avoided gluten for six to 12 months (or more) it is advisable to consider an HLA gene test before a gluten challenge. The HLA gene test will help determine if the patient is even in the risk group for celiac disease. (Only 1/3 of the US population have the genes for celiac disease.) After 6-12 months, it can be difficult to obtain a diagnosis of celiac disease after a gluten challenge, which is why this step is advisable.

Patients who have been on a gluten free diet for less than six months can consider a gluten challenge under a physician's supervision. A challenge would typically require an adult or a child to eat some gluten for four to eight weeks. For some, a twelve week challenge could be required but no challenge should last more than 12 weeks in children. The patient would eat a specified amount of gluten every day.

Many patients are concerned about participating in a challenge. Medical research shows that a limited challenge of this sort provides a greater medical benefit when it leads to a correct diagnosis of celiac disease. The challenge would need to be maintained if a positive antibody test result is received, because the biopsy procedure also depends on the presence of an autoimmune response.

For children, eating a saltine cracker each day would be enough gluten to conduct a challenge and for adults, a slice of bread a day would be adequate. The challenge would need to occur for six to eight weeks before the test in order for it to be accurate. Accordingly, we will not be able to register individuals for the screening who cannot meet this criteria, should they wish to be tested after following the diet.

Source: Open Original Shared Link

_________________

Meline

Marcydawns Newbie
Marcydawns
Posted
  • Author

I actually just ordered the DNA test from Enco Labs online... I think it is my best bet....

Marcydawns Newbie
Marcydawns
Posted
  • Author

for me its not about feeling deprived, its about figuring out how careful I have to be when I go out.

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Jestgar Rising Star
Jestgar
Posted
I have never been diagnosed with Celiac. Two years ago my doctor at the time only tested me for IGA and IGG antibodies. The IGG came extremely positive. She immediately put me on a Gluten Free diet. By the time I made it to the Gastroenterologist and got the real blood tests and the endoscopy nothing showed up positive.

Anyway...my question is: I feel horrible, I have heartburn, I am short tempered and snappy... although no longer I migraine I still have a dull pain behind the eyes. I am not sure if it is worth it to keep eating gluten for the next 26 days... but I also have the issue that we NEVER figured out the true cause....

Most people define "gluten intolerant" as 'a positive response to removing gluten in the absence of positive lab tests'.

You had a positive IgG test (I'm guessing it was antigliadin), and are having a negative response to adding gluten back into your diet. I would say you have Celiac.

Keep in mind that the biopsy, and the anti ttG tests measure damage. You will have to eat enough gluten to damage your body in order to get a lab test that "diagnoses" Celiac.

ravenwoodglass Mentor
ravenwoodglass
Posted
I actually just ordered the DNA test from Enco Labs online... I think it is my best bet....

Do keep in mind though that gene research is in it's infancy. Not all folks with celiac have DQ2 or DQ8, there are other celiac genes but many places will tell you that you can't have celiac if you don't have those genes.

As to the going out issue you need to be just as careful about CC whether you are a celiac or gluten sensitive. It is a common misconception that those who are 'only' gluten sensitive don't have to be as strict. They do.

Marcydawns Newbie
Marcydawns
Posted
  • Author
I would keep a careful record of the symptoms and call your doctor regularly to fill him in. Your progression is a common one and I would not be surprised if the D hits with the next day or so. What you are doing is a gluten challenge. If this was ordered by an allergist type doctor they would tell you to stop when symptoms got severe. Your doctor wants to continue the challenge until enough damage can be done so you show postive on a biopsy. 26 days may not be long enough for that to happen. It is generally considered to take closer to 3 months. Whether you want to continue to that point is up to you. The treatment for celiac or 'gluten sensitivity' is the same, strict adherence to the diet. Just because someone is 'just' sensitive does not mean that they can 'cheat' on the diet or that serious damage can't be done to other body systems.

Well ravenwoodglass, you were exactly right.... my stomach is telling me who is boss today. I think 4 days was enough of a challenge. I have been back on Gluten free for two days now. I think I have had enough proof that I cannot tollerate gluten and I suppose I really can live without an official diagnosis. On top of that, Endco Lab called me--- they cannot do business in my state (NY).

After two years of trying every gluten free bread and pizza crust out there and being disappointed... I think it's time to buy myself a nice bread machine and start cookin.... nothing like shopping to make yourself feel better.

Thank you everyone for your responses and support!

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