Embarrassed

[Poodle<3]

After many different types of diagnoses over the years, from GI to neurological to orthopedic I have finally been tested for celiacs disease.  The serum test was positive (DGP IGG), but biopsy negative.  My GI diagnosed me with gluten intolerance because of the positive DGP-IGG.  I have been trying to go as gluten free as possible, however I do not believe my family thinks this is a real thing.  They think I am being "over the top" when I ask them not to use the same spoon to stir my spaghetti that they used for their spaghetti containing gluten etc...  After giving up gluten for the past two weeks many of my symptoms have been worse.  I don't know if its from cross contamination or my body detoxing.  This has been hard without an actual celiac diagnoses, as my family is starting to make me believe I am crazy and I am starting to become embarrassed with the cross contamination issue.   Has anybody else gone through the "unsupportive family" stage?

[Ennis-TX]

Uhh yeah, I had major neurological issues and was extremely sick all the time, I am adopted, and my family was really iffy about the disease, They did not understand it all  or why I was getting sick, and mentally breaking. Like Going INSANE mental break downs, along with all my other issues. They had a hard time understanding why something so simple could make me progressively more sick. I still recall the one crazy fight with my mother when I tried throwing away her cream of wheat when she contaminated my pot and cooking area with it. In the end I had to move out into a dedicated gluten-free house. It gets, really bad when you can get issues from drawers, fridge/cabinet/sink handles, stove knobs, etc. Even laying out freezer paper, turning on the tap and opening everything before hand sometimes I would miss something.     I can link my trauma adventure page if you like, I might suggest trying to buy prepared gluten-free foods, or setting up your own little mess kit area in your own room. There is a list in the food section I composed of gluten-free food brands and how to get them.    Or you could go simple and just eat more simple and raw meals that you do not have to fix much.   Oh and on a side note be careful of shampoos, and soaps, not much but it bothers many of us.

[Poodle<3]

Thanks Ennis_Tx.  Would you be able to link that page?  It's just been hard dealing with this when nobody around me seems to be supportive.

 

 

[Jmg]

3 hours ago, Poodle<3 said:

Has anybody else gone through the "unsupportive family" stage?

My family have been very supportive but even then there's a big understanding gap to breach and the commonly held stereotype of the 'fussy eater' 'first world problems' type to overcome.  To put it another way, most people don't know what gluten actually is, but they have seen comedians lampooning gluten eaters as either delusional or attention seeking:

Even if people accept you're avoiding gluten they probably don't understand why, what the potential side effects are and, most crucially, that as it's an immune mediated response the very smallest quantity of gluten from cross contamination can be a problem for you.

I think you have to try and bridge this understanding gap by firstly making sure that your own knowledge is sufficient and then by discussing it with them in a conversational way. Explain the many different hidden sources of gluten in a western diet, that it survives high temperatures and hides in non stick pan scratches, colanders and wooden utensils. Tell them that its your bodies own immune system that identifies it as a threat. You could maybe use the extreme reaction of people with peanut allergies as an analogy, it's not the same process but it's something that maybe more people are aware of.  If they're willing to look at some online literature that may help them understand, but it's probably better coming from you. 

3 hours ago, Poodle<3 said:

After giving up gluten for the past two weeks many of my symptoms have been worse.  

It's still early days. Do try and eliminate any cross contamination or hidden gluten sources but also don't worry if all symptoms don't immediately resolve. It's a process and it may take some time. 

Best of luck, hope you're soon feeling a lot better

 

[Ennis-TX]

2 hours ago, Poodle<3 said:

Thanks Ennis_Tx.  Would you be able to link that page?  It's just been hard dealing with this when nobody around me seems to be supportive.

 

 

  PS that story with my mother, I ended up pouring the box of cream of wheat in the trash, and she ran in, and I will tell you for a 50+ year old she can deliver a kick that will lift you off you feet like jackie chan

[Lukas]

9 hours ago, Ennis_TX said:

Uhh yeah, I had major neurological issues and was extremely sick all the time, I am adopted, and my family was really iffy about the disease, They did not understand it all  or why I was getting sick, and mentally breaking.

Hello Ennis! What kind of neurological issues did you have?

[Ennis-TX]

 

5 hours ago, Lukas said:

Hello Ennis! What kind of neurological issues did you have?

My Trauma post covered my main issue of extreme brain fog, things I used to do or know I could just ......I could not do them or think about  them clearly my mind would loop like a broken record, I lost feeling in my hands and feet, sometimes would have a hot needles feeling of being stabbed but this ended up being a magnesium deficiency caused by the disease and damage. On a few occasions I would loose motor control and be stuck on the floor but this has only happened 4 times. I suffered what seems like permanent brain damage from it. During my process of trying to figure it out years ago I lost the ability to look at and do computer coding. I used to be able to do computer programing, now it just seems to make no sense or start to rearrange itself on the page as I try to read it. This started happening before I knew what I had and was on a very high gluten diet in college.

[GFinDC]

22 hours ago, Poodle<3 said:

After many different types of diagnoses over the years, from GI to neurological to orthopedic I have finally been tested for celiacs disease.  The serum test was positive (DGP IGG), but biopsy negative.  My GI diagnosed me with gluten intolerance because of the positive DGP-IGG.  I have been trying to go as gluten free as possible, however I do not believe my family thinks this is a real thing.  They think I am being "over the top" when I ask them not to use the same spoon to stir my spaghetti that they used for their spaghetti containing gluten etc...  After giving up gluten for the past two weeks many of my symptoms have been worse.  I don't know if its from cross contamination or my body detoxing.  This has been hard without an actual celiac diagnoses, as my family is starting to make me believe I am crazy and I am starting to become embarrassed with the cross contamination issue.   Has anybody else gone through the "unsupportive family" stage?

Symptoms changing after going gluten-free are a good indicator that gluten is affecting your body.  A person who has no issues with gluten should not experience a change in digestion from removing it.  So your body is confirming what your antibody tests showed, that you should not be eating gluten.

Other people may not understand eating gluten-free,  You have to take care of yourself.  If they don't understand that's fine, as long as they don't contaminate your food.  If they are blood relatives they may have the celiac genes also and develop celiac disease themselves.  They should be tested for celiac.

[Sara789]

@Poodle<3 - I'm sorry about the trouble with your family and your symptoms getting worse after going gluten-free. My symptoms got extremely worse after going gluten-free: brain fog and brain issues that felt like I had suffered a concussion, burning bone and joint pain, etc. It was strange. After about 1 month on the GFD, I finally started to feel better. I live alone, so my home is now gluten-free. The cat didn't have a say about her food.

Some of my family and coworkers think it's a joke, but others just can't understand how serious it is or what cross-contamination is. I had a boss tell me she would rather have celiac disease than *her minor issue* because she likes salads. I felt compassion for the issue she was going through until it felt like she was competing with me for worse health issue. Too bad I don't like salads, otherwise celiac disease would be a breeze (Sara typed sarcastically). 

Keep on trying, that's all we can do. Setting up a little kitchen in your room (if you have your own room) is a great idea. It's a pain, but worth it. I now have a mini frig for my work office so that I don't have to worry about keeping my food in the contaminated community frig. My frig also stays a lot cleaner and doesn't smell.  

[ironictruth]

On 1/29/2017 at 2:03 PM, Poodle<3 said:

After many different types of diagnoses over the years, from GI to neurological to orthopedic I have finally been tested for celiacs disease.  The serum test was positive (DGP IGG), but biopsy negative.  My GI diagnosed me with gluten intolerance because of the positive DGP-IGG.  I have been trying to go as gluten free as possible, however I do not believe my family thinks this is a real thing.  They think I am being "over the top" when I ask them not to use the same spoon to stir my spaghetti that they used for their spaghetti containing gluten etc...  After giving up gluten for the past two weeks many of my symptoms have been worse.  I don't know if its from cross contamination or my body detoxing.  This has been hard without an actual celiac diagnoses, as my family is starting to make me believe I am crazy and I am starting to become embarrassed with the cross contamination issue.   Has anybody else gone through the "unsupportive family" stage?

DGP can absolutely be false positive. Google will not tell you that but I have found multiple studies in journals showing this and have also been told this by two different celiac clinics. I myself test positive to DGP when the assay is ran one way and negative to it when run another way. It is only a matter of time before the rest of Google University stops claiming it is overwhelmingly accurate. The test is young, toughly 10-12 years. 

How many biopsies were taken? Do you have the report? Is there any inflammation at all in the small intestine? Did you have the gene test?

If you still feel sick after some time on the gluten-free diet your health issues might not be gluten related. You might want to consider other diagnoses. 

As for taking precautions in the interim, I am so sorry. My brother is celiac and they have a gluten-free house. When I was trying to see if cc was keeping me sick, I stopped even cooking at my boyfriend's and asked before even kissing him. Pretty sure he thought it was nuts too but he kept his mouth shut. This life can be extremely restrictive and more frustrating if you are still sick without an official diagnosis.

Cycling lady suggested that I try a plastic bin with my own pans, spoons, that I could tuck away from people. That might work for you. 

Good luck! I hope you feel better soon and I wish your family was more supportive. 

[Gemini]

6 hours ago, ironictruth said:

DGP can absolutely be false positive. Google will not tell you that but I have found multiple studies in journals showing this and have also been told this by two different celiac clinics. I myself test positive to DGP when the assay is ran one way and negative to it when run another way. It is only a matter of time before the rest of Google University stops claiming it is overwhelmingly accurate. The test is young, toughly 10-12 years. 

 

The DGP test is much newer than 10-12 years old.  I was diagnosed in 2005 and it did not exist then.  It was not added to my repeat testing until 2015 by the lab I use which is more progressive than most hospital labs.  If the test is so unreliable, than why is it still used?  Maybe they should revert back to the AGA IgA/IgG tests, which was widely used when I was diagnosed, is still used today by a number of labs and is fairly accurate for those who pop an antibody test.

Let's face it....testing is still iffy because there are people with full blown Celiac who do not test positive on antibody tests.  No doctor can explain that one, either, but I think it is just the nature of testing for AI diseases.  We still do not know that much about the immune system today.  For those caught in the trap of only one test positive and a negative biopsy, gene testing should absolutely be done. It may not provide concrete diagnostic answers but it's another piece of the puzzle that gives clues to the overall picture.  I would trust a positive DGP over a negative biopsy. So many doctors miss damaged parts and then people have to get to the point of severe illness before they find it.  That is unacceptable.

[cyclinglady]

The DGP is the only test that was positive for me and my biopsies revealed a Marsh Stage IIIB.  I also improved (anemia resolved) on the gluten-free diet.  It is now the only test my GI orders for dietary compliance because my TTG is always negative.  

A few years ago, the University of Chicago (I just like their website because it is easy to understand, but others are good too) used to list just the TTG.  So, when I recommended testing to forum members, I listed all the tests because if my GI had not ordered the entire panel, I would still be undiagnosed.  Then the University added in all the celiac tests.  Guess  they found out that there is no "one size fits all" blood test.  

[ironictruth]

I agree with both Gemini and Cycling Lady on their points. 

DGP is roughly a decade old, with perhaps just newer use in the states. 

All I am trying to point out is that there is research studies done on false positive DGP and some of the subjects were even gene negative. 

So if you find yourself getting sicker with no improvement on a gluten free diet, you may not be looking at gluten as your culprit.