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Billygean

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Billygean Apprentice
Billygean
Posted

Well you can probably see from my other posts that I had mono followed by chronic fatigue and a lot of digestive issues. My coeliac test was negative but I went gluten free on the advice of a coeliac relative and got almost better. Since I still had a while before returning to college I decided to try a gluten challenge. I had four slices of bread in four days and was in bed for the best part of a month. I'm still pretty confused because I also had a cold at the time which can cause issues for people with chronic fatigue. I went off the gluten though and I am no longer ravenous and light headed, and the chronic fatigue's almost gone again.

Saw a doctor and my relative with coeliacs said he might diagnose me on dietary evidence. He's sent me for a blood test and says it'll be positive if I have it. I know this is rubbish so I saw another dr. He was great and said to keep an open mind and do the blood test as if it's positive he can diagnose me but I've been glutenf ree for another 6 weeks now (6 months before the gluten challenge) so we think it won't be. He's referred me - but I'm not going to eat wheat - so I don't really know what to do next?!?

BG

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nikki-uk Enthusiast
nikki-uk
Posted
Saw a doctor and my relative with coeliacs said he might diagnose me on dietary evidence. He's sent me for a blood test and says it'll be positive if I have it. I know this is rubbish so I saw another dr. He was great and said to keep an open mind and do the blood test as if it's positive he can diagnose me but I've been glutenf ree for another 6 weeks now (6 months before the gluten challenge) so we think it won't be. He's referred me - but I'm not going to eat wheat - so I don't really know what to do next?!?

You are right in thinking your blood test will more than likely come back neg after 6 weeks gluten-free - a small bowel biopsy would also most likely be negative as well I'm afraid :(

So, see the doc anyway (possible diagnosis on dietary evidence?)

OR do the gluten challenge (at least 6 weeks ON gluten)....only you know if you are up to that

OR take a gene test (might give you a better idea if you KNOW you carry the 'known' genes for celiac disease)

OR you could just carry on as you are :)

There are many people on this site without a 'formal' diagnosis, but KNOW gluten is no good for them.

Good Luck :)

ang1e0251 Contributor
ang1e0251
Posted

I'm one of those with no official dx. I don't feel the need and will not go back on Gluten , uh-uh. My children are grown and don't need my test results if they choose to be tested. Also I'm a little concerned how my insurance carriers will treat me with a dx. I've heard rumores. You know how you feel gluten-free, if you choose not to do a challenge, it's a personal choice of your own.

zero Newbie
zero
Posted

The gene test sounds like a good suggestion. Have you been tested for a wheat allergy (are there skin tests for that)? It is nice having a label of celiac to justify the dietary restriction but your reaction is so severe that you might just be going through a lot of pain, hassle and expense to finally be told to avoid gluten which you already know.

I'll also suggest that if your feeling adventurous (and because I am an engineer and think of such weird things), you could do another experiment. You have a reaction after eating bread but you introduce a bias because you know you are eating gluten. With the help of a conspirator, you could set up a series of meals which usually don't but occasionally do contain hidden gluten. Perhaps a little flour mixed into spaghetti sauce or something and record what your reactions are. At the end of the experiment you can compare how your reactions correlate to the gluten. I suggest this because one of the most satisfying experiences I had after diagnosis and being gluten free was having an unexpected reaction which I tracked down to some soy milk containing wheat. Even with the celiac diagnosis, it confirmed to me that gluten really was the problem which was not apparent prior to the diagnosis. Good luck.

rob

Amyleigh0007 Enthusiast
Amyleigh0007
Posted

There is a skin test for wheat allergy. I had it done last summer. My allergist diagnosed me with gluten intolerance based on positive resposne to diet (among other factors) so maybe visiting an allergist would be helpful. She seemed to know much more about Celiac and gluten intolerance then my primary doctor.

buffettbride Enthusiast
buffettbride
Posted

My husband is one of those in the "no diagnosis" category as well. We discovered his gluten intolerance after our daughter was diagnosed with Celiac and we decided to keep our house gluten free. Suddenly his tummy "wrongness" went away and so did that peculiar rash on his fingers. ;) He decided that pursuing a diagnosis wasn't as important since he knew gluten (and sometimes dairy) made him feel awful, even when his blood screen came back negative.

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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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