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Diagnosis Confusion

KayM

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KayM Rookie
KayM
Posted

Hello all I thought Id write in for some advise. I have been gluten free for a year. I know that means I am unable to be tested so here I am I feel great. I arrived at this by totally going on fresh foods veg fruit and meat. once I was feeling good again I begain to add back well bread and pasta and all that brought me right back to yuck. so I heard about Gluten issues and started reading and decided to try and Im doing great. I am also dairy free, nut free, and no citric acid. for some reason bannanas and cucumbers are bad too. So now I only struggle with some brain fog and vertigo. on those days though I feel I may be having sugar lows Ive never been high but it just for some reason feels like a sudden drop. I am not sure how to handle it.

 

My doctor sais I can still do the genetic test and it will give them something to go on. but insurance sais no. My dad is currently being tested for celiac so hopefully that will give us some clues too. 

 

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moosemalibu Collaborator
moosemalibu
Posted

It can be very difficult finding a diagnosis after being gluten free for so long, especially if you are unwilling to do a gluten challenge (I do not blame you for not wanting to do that). The familial link can definitely give you more pieces to the puzzle but not necessarily a positive or negative. There are many here that just consider themselves Celiac and don't worry about official diagnosis.

BlessedMommy Rising Star
BlessedMommy
Posted

I'm in a similar situation. I may eventually pay for the genetic OOP, just to satisfy some curiosity, but I know that I can never, in good conscience, do any type of gluten challenge, based on the results of my only challenge that I've tried to do. I've been gluten-free for over 4 years, I can only imagine what a disaster a gluten challenge would be at this point! If they ever develop testing that doesn't require a gluten challenge, though, I'll be one of the first in line to try it.

 

The main thing is, if you've decided to forgo celiac testing, make sure that you treat it like celiac and be just as careful as a celiac would.

 

Clean your house out of old scratched up pots and pans that can't be thoroughly cleaned, put your cast iron pans in a self clean oven and then reason, replace scratched plastic utensils, and all wooden utensils, old cookie sheets, etc. Make sure that you take care whenever going out of the house as well, in regards to eating at friends and family members, and ordering at restaurants. 

 

Good luck!

KayM Rookie
KayM
Posted
  • Author

I too am thinking of just paying for the genetic test but with everything that I have come through I don't want to do a gluten challenge. Thanks so much for the advise I at least feel better knowing there are other self diagnosed out there. I wish I had known before I went gluten free about all the testing but I had no Idea I just wanted to feel better.

I am really carful but I  am gluten free my husband is not so at this point we have a split kitchen I have my dishes and cooking stuff and he has his its a little crazy but we make it work. Going out is especially rough we are in an area where gluten free is beginning to be and issue so more places are starting to understand but mostly I got to fend for myself.

cyclinglady Grand Master
cyclinglady
Posted

I was diagnosed last year, but my husband went gluten-free 13 years ago at the advice of his GP and my allergist. There is no way he will ever do a challenge at this point. He knows that gluten makes him very sick. Though he says that I have fared much better in terms of support from medical and family.

The kitchen is my domain and I prepare all the food, so I managed to keep him safe. All meals together were gluten free for years. Gluten is consumed outside of the house. It is nice to not have to watch or worry about eating a sandwich in front of you. He would get glutened outside the house though. We have found a few safe places to eat and our families accommodate us, but I typically host most everything or my Mom does. He helped pave the way for my transition.

Best bet, just tell everyone you have celiac disease.

Fenrir Community Regular
Fenrir
Posted

It is a tough situation.

 

Having an official diagnosis can be helpful if you need medical treatment of some sort later on that may be related to it because of how insurance works. At the same time, no mentally healthy person wants to make themselves sick.

 

It might be best to just act like you have celiac and so long as you are symptom free on a gluten diet, let it be.

NoGlutenCooties Contributor
NoGlutenCooties
Posted

Hi KayM -

 

The genetic tests don't actually tell you much.  Approximately 30% of the population have at least one of the two known Celiac genes even though only about 1% of the population actually gets the disease.  There have also been folks who have tested negative for either of the 2 known genes and were still diagnosed with Celiac via blood test and/or biopsy.

 

In my opinion, if going back to eating gluten made symptoms reappear and those same symptoms went away again when you went gluten free again, then you know you have an issue with gluten.  You don't know if it's Celiac or non-Celiac gluten intolerance but you know it's something you can't eat.  Period.

 

If you still have a few lingering symptoms, first make sure you are not still getting small amounts of gluten from somewhere unexpected.  Re-check all of your labels on everything.  If you are sure you're not ingesting gluten (to include by cross-contamination) and you think your remaining symptoms may be low blood sugar related, try making sure you get protein every 2 - 3 hours during the day.  You don't have to have had high blood sugar to have low blood sugar. 

I used to get low blood sugar all the time - doctors just told me that I'd be diabetic one day and until then they couldn't help me.  Idiots.  Anyhow - regular intake of protein and monitoring your sugar intake can nip it in the bud.  Be careful of sugary foods that are high in natural sugars too - like fruit.  To this day I can't eat fruit by itself without feeling crappy.  Always eat some protein with it to help balance it out.

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KayM Rookie
KayM
Posted
  • Author

Hi KayM -

 

The genetic tests don't actually tell you much.  Approximately 30% of the population have at least one of the two known Celiac genes even though only about 1% of the population actually gets the disease.  There have also been folks who have tested negative for either of the 2 known genes and were still diagnosed with Celiac via blood test and/or biopsy.

 

In my opinion, if going back to eating gluten made symptoms reappear and those same symptoms went away again when you went gluten free again, then you know you have an issue with gluten.  You don't know if it's Celiac or non-Celiac gluten intolerance but you know it's something you can't eat.  Period.

 

If you still have a few lingering symptoms, first make sure you are not still getting small amounts of gluten from somewhere unexpected.  Re-check all of your labels on everything.  If you are sure you're not ingesting gluten (to include by cross-contamination) and you think your remaining symptoms may be low blood sugar related, try making sure you get protein every 2 - 3 hours during the day.  You don't have to have had high blood sugar to have low blood sugar. 

I used to get low blood sugar all the time - doctors just told me that I'd be diabetic one day and until then they couldn't help me.  Idiots.  Anyhow - regular intake of protein and monitoring your sugar intake can nip it in the bud.  Be careful of sugary foods that are high in natural sugars too - like fruit.  To this day I can't eat fruit by itself without feeling crappy.  Always eat some protein with it to help balance it out.

This is good to know, I know I get really sick if I eat gluten I did just go through my food and found a few mistakes I had made. I have begun monitering my sugar to see if thats the issue and I am trying to do more protien it seems to help. I do find that I cant eat just fruit and candy has to be very small amounts or I feel awful. I believe Im on the right track and I do feel so much better no pain is awsome! So I will keep to it . Thanks so much for your input it helps so much to be able to talk to others who actually know what Im going through.

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    • Theresa2407
      Is this celiac?

      By Theresa2407 · Posted

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I use Calm because my body doesn’t absorb Magnesium and I only need to take once in evening.                                                    No dairy of any kind (milk, cheese, yogurt, No breads, No past,  No oats, No pizza, No gluten-free beer, No snacks like cake, biscuits, pies, donuts.                                                                                                Many dietitians will tell you to follow a gluten free diet but you have to heal first. Don’t misunderstand me, dietitians are our friends and help us.                                                                                              10% of people with gluten-free will be intolerant to dairy                                                                                  10% can not tolerate oats                                                                                                                     After the six weeks, you can start to add these foods back into your diet. 1 new food every 4 days; this way you know if you react to this food.                                                                                                  Oats shouldn’t be tried for 1 year after being diagnosed; then start with 1/3 of a cup. 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I talk to many newly diagnosed people who start the gluten-free diet with pasta, breads, snacks, and pizza. After a month or so, they do not know why they don’t feel any better and still are sick with their original symptoms: They worry the diet is not working for them. For some there may be other factors involved, but most just aren’t letting their body heal properly. I blame the internet, and misinformation it contains. People want a quick fix, not realizing this is a life long disease. They need a good support group, with people who have been through this and knows what works! This is what I have found will work for you. 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    • Wheatwacked
      Is this celiac?

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      Marsh 3b is the Gold Standard of diagnosis for Celiac Disease.  Until recently, regardless of antibody tests, positive or negative, you had to have Marsh 3 damage to be awarded the diagnosis of Celiac. As I understand you,  you were having constant symptoms..  Your symptoms improved on GFD, with occassional flare ups. Did your doctor say you do and you are questioning the diagnosis? Regarding your increasing severity when you get glutened it is "normal".  Gluten acts on the Opiod receptors to numb your body.  Some report withdrawal symptoms on GFD.  I was an alcoholic for 30 years, about 1/2 pint of voda a day. Each time I identified a trigger and dealt with it, a new trigger would pop up.  Even a 30 day rehab stint, with a low fat diet (severe pancreatis) during which I rarely had cravings.  Stopped at a Wendys on the way home and the next day I was drinking again.  20 years later, sick as a dog, bedridden on Thanksgiving, after months of reasearch, I realized that gluten free was my Hail Mary.  Back in 1976 my son was diagnosed at weaning by biopsy with Celiac Disease and his doctor suggested my wife and I should also be gluten free because it is genetic.  At 25 years old I felt no gastro problems and promised if I ever did I would try gluten free.  Well, I forgot that promise until I was 63 and my wife 10 years dead.  Three days of gluten and alcohol free, I could no longer tolerate alcohol. Eleven years gluten and alcohol free, with no regrets. Improvement was quick, but always two steps forward and one back.  Over time I found nineteen symptoms that I had been living with for my entire life, that doctors had said, "We don't know why, but that is normal for some people". Celiac Disease causes multiple vitamin and mineral deficiency.  It is an autoimmune disease, meaning your immune system B and T cells create antibodies against ttg(2) in the small intestine in Celiac Disease, and sometimes ttg(3) in skin in Dermatitis Herpetiformus.  'Why' is poorly understood.  In fact, it wasn't even known that wheat, barley and rye gluten was the cause.  Celiac Disease was also called Infantilism, because it was deadly, and believed to only be a childhood disease. So, as part of your recovery you must deal with those deficiencies.  Especially vitamin D because it contols your immune system.  Virtually all newly diagnosed Celiacs have vitamin D deficiency.  There are about 30 vitamin and minerals that are absorbed in the small intestine.  With Marsh 3 damage you may be eating the amount everyone else does, but you are not absorbing them into your system, so you will display symptoms of their deficiency.   As time passes and you replenish your deficiencies you may notice other symptoms improve, some you did not even know were symptoms. Our western diet has many deficiencies built into it.   That is the reason foods with gluten are fortified.  Gluten free processed food are not required to fortify.  Vitamin D, Iodine, choline.  The B vitamins, especially Thiamine (B1) run deficient quickly.  We only store enough thiamine for 2 weeks so the symptoms of Gastrointestinal BeriBeri can come and go quickly.  Magnesium, zinc, etc. each having its own symptoms affecting multiple systems.  High homocystene, an indicator of vascular inflamation can be cause by deficient Choline, folate, B6 and or B12.  Brain fog symptoms by deficient choline, iodine, thiamine B1. Dietary intake of choline and phosphatidylcholine and risk of type 2 diabetes in men: The Kuopio Ischaemic Heart Disease Risk Factor Study  
    • Rogol72
      Help I’m cross contaminating myself,

      By Rogol72 · Posted

      I cut out the rice because it was affecting my stomach at the time ... not necessarily dermatitis herpetiformis. It was Tilda Basmati Rice, sometimes wholegrain rice. I was willing to do whatever it took to heal. Too much fiber also disagrees with me as I have UC.
    • trents
      Is this celiac?

      By trents · Posted

      But you didn't answer my question. When you consume gluten, is there an identifiable reaction within a short period of time, say a few hours?
    • Scott Adams
      Is this celiac?

      By Scott Adams · Posted

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