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I Am Sad

hayley3

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hayley3 Contributor
hayley3
Posted

because I hate to be in limbo.  After 30 years of being sick, yes I want a diagnosis, but I'm never going to get one, I can see that.

 

The allergist said to stop eating gluten for 6 months.  That my probability of celiac disease is 1 in 35.  What good will it do to stop eating gluten..the tests and endo were negative.  What's the use?  I also have SIBO, and constantly changing food allergies so how can I even tell what is bothering my stomach, what is constipating me.  I can't, trust me, I've tried, because everything bothers me.  One time it's potatoes, next it's sugar.  I'm even allergic to gluten free grains! O.O

 

And then that leaves my daughter also hanging in limbo.   She also tested negative. 

 

I just cannot see the point.   I ate gluten for 2 months before the Endoscopy and all they saw was inflammation.  I feel like an imposter now that I know I don't have celiac disease, esp after I read that most gluten sensitivity is really SIBO.

 

I just needed to vent...thanks for listening. 

 

Cheryl :unsure:

 

 

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1desperateladysaved Proficient
1desperateladysaved
Posted

I hope you will have definitive diagnosis and good advise as you go on.  Please don't give up.  I too went through 30 years of symptoms.  I came out of it with many food intolerances, but layer by layer I am figuring out how to turn things around, and I expect you will be able to do this with time. Some people never do have a positive celiac diagnosis, but that doesn't always mean that one should be eating gluten or that they don't have celiac.

hayley3 Contributor
hayley3
Posted
  • Author

Thanks but I feel like I'm barking up the wrong tree.  Were you finally dx'd?

cyclinglady Grand Master
cyclinglady
Posted

Hey, my husband does not have a formal diagnosis. My allergist and his GP suggested 13 years ago that he give up gluten just to see if he felt better -- and he did! No more hellish snoring ( that affected me), no more body aches, and fatigue! He knows when he gets glutened too!

Even though I was only diagnosed in March of 2013, I have dealt with allergies all my life! No eggs, tree nuts, milk or garlic. I have food intolerances too (Xantham Gum and pineapple). Have you considered food rotation or a histamine free diet? It may be worth investigating.

Hang in there. Do not give up the fight! Maybe consider going gluten-free like your allergist recommended. There is hope!

hayley3 Contributor
hayley3
Posted
  • Author

@cyclinglady

I can't tell when I am glutened.  I thought I could tell but they say for celiacs who don't get better on a gluten free diet they have SIBO which I do. (I went on the SCD diet 7 yrs ago, so I cut out gluten long ago, but then slowly added eating a chicken wrap at Wendy's once a week, then a doughnut before the EGD).  I did a 10 day water fast not long before I started seeing the GI doctor trying to stop the migraines, who is positive I don't have celiac.

 

Not to sound gloom and doom, but I'm gloomy and doomy at the moment.  Between not eating gluten, and not eating foods that trigger migraines and not eating foods on the fodmap diet, and not eating foods that I was dx'd as being allergic to, there is not much left to rotate.  I can have eggs though so I can make salad dressing and sauces.   I am really good at making mayo and with variations, such as adding roasted red peppers or horseradish.  Without dairy it's hard to make ranch dressing although I do make a reasonably good substitute. 

 

Cheryl

cyclinglady Grand Master
cyclinglady
Posted

I am grain-free following a low carb, high fat diet for diabetes. It is working out well. Am six months into the diet. What do I eat? My new diet is rich in fats and protein. No more sugar highs and lows.

At first I was bummed. No gluten, allergies, intolerances.......what more could I give up? Carbs! I can handle it, but our society is food driven. It drives me crazy. Now, instead of suggesting lunch, I invite friends for a walk. Think that will work at Thanksgiving?

notme Experienced
notme
Posted

Now, instead of suggesting lunch, I invite friends for a walk. Think that will work at Thanksgiving?

hahaha - this year i am cancelling thanksgiving...  :D

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cyclinglady Grand Master
cyclinglady
Posted

hahaha - this year i am cancelling thanksgiving...  :D

Aw, the joys of having a genetic disease! Happily having another gluten free Thanksgiving this year with extended family. Imagine staying at a home that is gluten free.

Thank you A***** clan!

BlessedMommy Rising Star
BlessedMommy
Posted

Even if you never get a formal diagnosis, if you quit gluten and you experience symptom resolution, then you have your answer. Whether it makes you sick because you're celiac or because you have some other issue with it, the treatment is still: Don't eat gluten. LOL!

 

It doesn't make you an "imposter" to be gluten free without being DX'ed as a celiac. There are valid reasons other than celiac to be gluten free. (NCGS, gluten ataxia, etc.)

hayley3 Contributor
hayley3
Posted
  • Author

It would be justified if I were diagnosed but I am not, you are.  People laugh at me when I say I cannot eat gluten foods.  The doctors have not even heard of SIBO which I am dx'd with in addition to the all the maladies I posted in my signature.

BlessedMommy Rising Star
BlessedMommy
Posted

Don't worry about what people think. You can always say that your doctor recommended it for serious medical reasons or whatever. (it's really none of other people's business what your medical reasons are anyway)

 

I say things like, "I have to follow a strict gluten free diet for medical reasons.  I'm not one of those individuals on the fad diet. Please keep gluten away from my food." 

 

If people are your real friends, they will support you in what you need to do. 

cyclinglady Grand Master
cyclinglady
Posted

Ah, true. I was officially diagnosed in March 2013, but my husband has been gluten free for 13 years. He gave up gluten at the well-intentioned, if mis-guided' advice of my allergist and his GP. It has not been easy for him. He would be the first one to tell you that I have received so much more support than he has. But the fact that gluten provokes symptoms like fatigue, sinus infections, snoring, body aches, etc. is enough to keep him away from gluten. Does he have celiac disease? We will never know as he will never do a challenge. We suspect so, as many in his immediate family have other autoimmune disorders too. But a formal diagnosis is not worth it.

Stand your ground. You'll learn who are your true supporters!

BlessedMommy Rising Star
BlessedMommy
Posted

The main thing is to be sure in your mind what you need to do. If you are careful and never cheat, over time people will realize that you are serious about it.

 

My inlaws are supportive of my diet and went so far as to purchase (with their own money) a separate grill for gluten free items only.

 

Some people say that you need to get a DX so that you can get safe food when hospitalized, but I don't really think that's a big issue. When I went to the hospital, nobody asked for proof of celiac to order off of their gluten free menu. And if you're in the more likely situation where you're in a hospital that doesn't really understand G.F. and celiac, you'll probably end up having to have someone bring you food from home anyway. 

user001 Contributor
user001
Posted

That just plainly s*cks! You are a trooper for fighting the fight, you really are. Isn't inflammation a sign of celiac but also crohn's disease? Also autoimmune and genetic. I am lucky to be at risk for that one *sarcasm*.

hayley3 Contributor
hayley3
Posted
  • Author

A Rheum told me once that just because I had all these things going on, it didn't mean they were connected together and he made it clear I was wasting medical resources.    Surely I must want something monetary to keep coming back to him, he said.   So a diagnosis is pretty important to me.    And I know  a lot of people have had the same kind of doctor troubles that I have had.  But the thing is how could the tests be wrong with so much going on with me?  I know you don't know the answer either..just sayin....

 

Cheryl

w8in4dave Community Regular
w8in4dave
Posted

Have you ever had the blood test? Just curious. I was shocked when mine came out positive! But it sure gave me answers. So when you were off of gluten did it seem to make a difference? Even if you don't have Celiac does not mean you can't be Gluten Intolerant. A friend of mine is Gluten Intolerant and she went Gluten free and is a new woman! It's amazing! I don't think it's good for anyone to eat alot of Gluten, but the american diet is full of it! 

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