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Need Some Help And Opinions, Please

LoisArbuckle

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LoisArbuckle Rookie
LoisArbuckle
Posted

For six years now I have had stomach and body issues that no doctor can explain. The problems are getting worse. My symptoms are bloating, indigestion, acid reflux, nausea and vomiting daily, constipation, headaches, and extreme moodiness. I've been through 5 doctors and now I do not have insurance and cannot pay for any testing. My aunt and 2 of her 4 children were just diagnosed with Celiac disease. We all have very similar problems. My aunt tells me celiac disease is extremely difficult to find in most cases and I should just try a gluten free diet for a while and see if it helps. I stopped eating gluten a week ago. After day 3, almost all of my problems had gone away. I accidently ate some wheat this morning and have been sick ever since. I had half of a beer last night and had a headache within 30 mins.

I have given up on doctors. I am deep in debt with medical bills and can't take it any more.

Can I diagnose myself (for the most part) by sticking to a gluten-free diet?

Your thoughts are greatly appreciated.

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mushroom Proficient
mushroom
Posted

Hi, Lois, and welcome to the forum.

There are many of us on here who have never had any testing done. Some of us are related to celiacs, some of us through research have concluded that gluten could be causing our problems, some of us have found out that our problems were caused by something else. And a lot of us have found out that we also have issues with foods other than those that contain gluten.

You don't need anyone's permission to avoid gluten. But if you really need to KNOW that you are celiac then testing is the only way to find out for sure, even if a gluten-free lifestyle eliminates your symptoms. Issues that arise include the possibility (or even probability) of passing this on to your children; potential health and life insurance problems if you have the diagnosis on your records; not being able to stick to the diet without being "officially" diagnosed; problems with family members and friends accepting your need to be gluten-free if you do not have a diagnosis.

In the end it all boils down to what is right for you. Your symptoms and positive reaction certainly sound as though you should avoid gluten. But if you do want to be tested you must continue eating gluten for the results to be accurate. Ouch, I know this would be painful, but it is the only way to be 100% sure.

As for myself, I have never had any testing. I have a diagnosed celiac niece and her mother (my sister) is gluten free also, as is my husband. My sister and husband have never been tested either.

I hope this is of some help to you. Best wishes whichever way you decide to go.

Neroli

ShayFL Enthusiast
ShayFL
Posted

Hi Lois and welcome. A lot of people are self dx. You do not need a doctor's opinion to go on a gluten-free diet. But I will give a warning. If you are the kind of person that will "cheat" without an official dx, then you should get one. The reason being is that if you truly do have Celiac, everytime you eat gluten it will cause an autoimmune reaction and damage to your body.

Here is an example: Let's say you really are Celiac. So you go on a gluten-free diet and get better. But six months from now, you are feeling really good and you start to doubt that you even have a disease (this is common). So you say to yourself that you will eat a little gluten and see what happens. So you eat a pizza and everything seems fine. You conclude that you have no problem with gluten afterall and continue eating it. But you REALLY are CELIAC and you are getting major damage without symptoms (this happens and it is called "silent celiac" or "latent celiac". Then one day you dont feel well, you go to the doctor and they discover you have Type 1 diabetes or worse lymphoma. Because these 2 diseases are so closely related to Celiac, your doctor runs Celiac tests on you. And lo and behold you are Celiac afterall. But the damage is done. The results can actually be fatal.

So my advice to you is that if you are willing to stick with a gluten-free diet for the rest of your life without cheating, then do not worry about testing. It is always possible that you merely have an intolerance. But the cure is the same.....a gluten-free diet. The only difference is that an intolerance doesnt set off a cascade of autoimmune responses when you ingest gluten (although some think it can).

I hope this helps.

Lisa Mentor
Lisa
Posted

Hi Lois and Welcome!

Let's keep things simple in the begining.

You have several things working for you. You have a strong family history, you are symptomatic and you respond well to the gluten free diet. It may be very likely that you have Celiac, a gluten intolerance, sensitivity or an allergy to gluten.

If you would like to be tested, this is what you doctor should order:

Of the commercially available serologic tests that aid in the diagnosis of celiac disease, no one test is ideal. Using multiple serologies increases the diagnostic yield. Therefore, in the United States, screening in patients with possible celiac disease should consist of a panel of the following serologic tests:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

Take one step at a time and take some time to walk around this site. It's the best around. And know that there are many here that are self-diagnosed and those are quite content with that decision. Others, would like something more definitive. That will be a choice you may need to make.

In the mean time, feel free to ask away. We are here to walk you though it.

nora-n Rookie
nora-n
Posted

If you want some testing, you need to do this right away since the tests are calibrated to only be positive with severe damage, and you start healing right away.

I was negative testing (had accidentally been gluten-free because of lowcarb) but I am not going back in gluten. I do not need a positive test. I even tested negative on the gene test.

nora

LoisArbuckle Rookie
LoisArbuckle
Posted
  • Author

Thank you all so much for your help. I really think this is the answer to my problem. I'm going to stick with the diet since all signs point to gluten intolerance. I've given up on doctors so I'm not worried about testing, it would probably come out wrong anyway.

Do you guys have any suggestions for good gluten-free bread?

happygirl Collaborator
happygirl
Posted

Against the Grain

Gluten Free 4 Me

Gluten Free Pantry bread mixes

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      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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