I Think I Might Have Celiac, Please Help!

[AndreaMarie]

I have had ear problems since high school, I am now 29. I've never had an ear infection, but my ears always feel stuffy like when you take off and land in an airplane but the never fully "pop". I have had ct scans and been on steroids, and every kind of decongestant imaginable. Even the netti pot does nothing. Recently we put my dog on a wheat free diet at the vets suggestion, my dog has had ear infections forever and the vet read an article that wheat allergies can trigger ear infections I'm dogs. I started doing some research to see if the same was true for humans. And my research led me to think that perhaps a series of different issues throughout my life could all be the result of a gluten intolerance. I'm really hoping someone more knowledgeable on the subject could help me out: fingers crossed. Here is my story.

As a kid I threw up every single morning when I got top school, always about 20 minutes after eating my breakfasts, then I'd feel fine, so I'd forget to tell any adults about it, until the day I threw up on my third grade teacher. I later tested positive for eggs, beef, milk, beat sugar, and wheat along with dust mold and a bunch of trees and grasses. I was always very thin as a child, even as a baby, even though I was a good eater. Entering kindergarten a month after my 5th birthday I only weighed 28lbs by the end of kindergarten I weighed 32. I suffered from anxiety as a kid and was not allowed to watch the news. In 4th grade I was diagnosed with an auditory processing problem. They also tested the mold in my classroom to see if it was contributing to my behavoral and concentration issues. I was forced to eat lots of crazy food as a kid, like buckwheat and quinoa pancakes and homemade turkey patties. My doctor even once put me on a 3 month no sugar diet while in the 3rd grade. The vomiting seemed to dissipate by late middle school. And it was assumed I'd grown out of my allergies. In high school my knee would often swell and my left wrist would flare up which was believed to be carpal tunnel. I was tested for rheumatoid arthritis and a few other auto immune diseases by a knee doctor when I was in my mid teens. All came back negative. I had about a pint of fluid drained from my knee twice. I always assumed these issues were stemming from gymnastics. Around this time I also started to get the ear stuffiness and suffered from some depression. At 20 I had emergency surgery for a ruptured ovarian cyst which ruptured a blood vessel. For a year after that I had serious issues with constantly feeling constipated and bloated. Over the past 3 years my ears and head congestion has gotten worse with no resolve. A month ago I was put on augmentum which gave me severe diarhea for over a week I stopped that and was put on biactin. Ever since the antibiotics my stomach has never returned to normal. I always had periodic issues with feeling nauseas, or crampy but since the antibiotic it has been a constant feeling of nausea. Through research I am beginning to think all of these seemingly unrelated issues are all stemming either directly or indirectly from a gluten intolerance. Can an antibiotic damage ur stomach in a way that you are even more sensitive to gluten? Can someone who knows a lot about this give me some insight. I don't know what I should do. I can't see a doctor yet, as I am still waiting for my insurance to go through. Help?!?

[Di2011]

How long till your insurance is sorted and you can see a doctor?

[AndreaMarie]

I'm not sure, I am waiting on the state, they say 4-6 weeks, this week will be week 4.

[Roda]

Well it certainly sounds like you could be in the right place. If you can hold out for your insurance then I would request the blood tests. If not then you could trial the diet now. But be aware if you want testing down the road you will have to go back on gluten for about 3 months(eating 3-4 slices of bread or equivilent) to get the best chance of accurate testing. Here are the tests in the celiac panel:

Total IgA

IgA/IgG tTG

IgA/IgG DGP

IgA EMA

If you want accurate testing you need to stay on a full gluten diet. There is about a 30% chance of false negative on the blood work. You could always have an EGD with a minimum of 8-11 biopsy samples in the small bowel to look for villi damage consistent with celiac. Again there is around the same % of getting a false negative. If either or both are positive then it is almost pretty certain you have celiac. You also could have completely normal everything and still have a problem with gluten and and elimination diet is often the best diagnostic tool you can have for that. My oldest is nonceliac gluten intolerent. I have him as strict with his diet as his younger brother and I that have celiac.

On a side note how is the dog doing on his wheat free diet? Both my cat and dog are on a grain free diet because I didn't want the cross contamination. They both are doing wonderful on it. Thank your vet for the suggestion for your dog. It got you thinking of the possibility for yourself.

[AndreaMarie]

Lately I have been feeling so sick. It seems like anything I eat doesn't sit right in my stomach. I often feel crampy and I pretty much always feel nauseous. Sometimes when I actually do burp it's frothy and white. But I always feel light headed to, like when I get spells of hypoglycemia and I feel very weak. I'm so frustrated. This all has seems to have gotten even worse after a really bad reaction to augmentum. I ask my mom about my allergies as a kid, she said I was allergic to wheat too. Would they have even thought to test for celiac in the mid to late 80's?

[AndreaMarie]

Today I finally went to the ER (because the temporary insurance i have ONLY covers ER visits) after spending 3 hours with a financial counselor ( MassHealth is a nightmare!!!!.... But that is another issue. I told them my symptoms. I said they seem to have gotten worse after having an allergic reaction to augmentum. I also told him that it sort of felt like when I was a kid and would get sick after eating, before I found out about allergies to wheat and dairy amongst other things. I asked him if the damage to my stomach from the antibiotic could cause it to be more sensitive to food allergies or intolerances. He told me absolutely not possible, and that my stomach was probably just still sensitive to any food because of the bacteria that was killed off from the antibiotic. Then they gave me some stuff to stop nausea through an IV, and some thick white stuff to drink that tasted minty and numbed my mouth. As soon as I took it my head started to throb, my stomach pains got way worse, and I had shooting pains up my back. He just said some people don't tolerate it well. He basically treated me like I was exagerating how awful I felt and said he'd right me am rx for probiotics and some antacids. Then my labs came back and I have a UTI and a kidney infection so he added an antibiotic and vicodin for pain. I have no idea what to think.

Can anyone give me any insight, please!!!!!!

[AndreaMarie]

By the way my dog is doing great, we keep her on all grain free. Her ears haven't had an infection, and her nose and eyes which were always crusty are clear. She also has stopped wetting the bed in her sleep. We also found out she was allergic to salmon, after putting her on a grain free salmon food that she kept throwing up. Perhaps dogs can have celiac too.

[pricklypear1971]

The doctor's reaction is not unusual and to most would be reasonable; however, if you suspect an issue with gluten (and you have a history that suggests you may, along with other major food allergens) you should get tested and try a gluten-free diet to confirm.

A GP can order the above tests, as well as an ND.

Don't let the ER doc's lack of Celiac suspicion deter you. You have valid reason to suspect a gluten issue, especially if your symptoms haven't improved or disappeared from the treatment prescribed.

Most people here have had similar experiences with doctors.

[AndreaMarie]

I just feel really stuck because I can't go see a GP right now, not until Jan 1. Right now I can only go to the ER. And they just take basic blood work and don't seem to really listen to your symptoms. On another note the pain in whole abdomen has seemed to spread it radiates from my pelvic area up to the bottom of my rib cage and from the front of my stomach to my back, especially my mid to lower back. Is this normal with a UTI/ kidney infection? It feels like my guts are going to fall out, sort of like period cramps but all over not just in one area, and i feel nauseais. It seems to have gotten worse even though I started antibiotics last night. Has anyone gone through this before? What's normal vs when should I be concerned? I don't want to go back to the er unless I have too.

[pricklypear1971]

Hon, I really don't know about your pain...what is causing it. I know it's terrible.

If you are still in pain go back to the ER. Tell them about your history and tell them of your insurance situation and request the tests.

Your other choice is to try going gluten-free, and see if it helps. Yes, you will have to back on gluten for testing...but if you are this sick it may be worth it.

Explain the conundrum to the ER doc.

You can't be subtle about asking for the tests. Clearly state what you want. Worse thing they can do is say no, right?