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After Years Of Suffering, I'm Trying To Go Gluten-Free
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I've suffered with fatigue for over 20 years and over time I've started to have more symptoms.  I was diagnosed with hypothyroidism about 15 years ago.  After a few years of suffering with insomnia, I discovered a magnesium drink that I now would not be without.   I've had GI symptoms over the years.   I remember several years ago I had a friend who used to mock me (in a fun way) about my belching.  I have diarrhea more often than not but I haven't told my doctor because I don't want to be pressured to go for potentially painful tests.  

 

The weight has gone up over the years from being so tired and sedentary and eventually I was diagnosed with sleep apnea and started on a cpap.  I felt really good for a while but then that didn't work anymore.

 

I have okay days and bad days and never know what I will feel like the next day.   I now do green smoothies every day which have given me a bit more energy to function.  

 

I've tried so many things.... raw foods, juicing and more.  A few weeks ago I was having a bad spell and along with it I had more gas than usual.  My husband did an internet search to try to figure out what it could be and he was pointed to celiac disease or gluten intolerance.  I figure I've tried everything else so I've been trying to go gluten free for about a week now.  

 

I'm not sure how well I'm doing since from what I read there is a big concern about cross-contamination.  I plan to keep learning and studying and trying and hopefully I will see some improvement.  I have so many of the symptoms.  

 

My symptoms are:   fatigue, insomnia, GI issues (diarrhea, gas, sometimes bile), skin issues (I think I had psoriasis for a while a few years ago), red dots on my arms, ADHD, feeling of unreality (maybe also known as brain fog), difficulty concentrating, hypothyroidism (Hashimoto's), joint pain and stiffness (now using a high dose of fish oil which has really helped with that), anxiety/depression (on and off over the years).  There are probably more symptoms which I'm not able to think of at the moment.   I'm tired of this suffering and tired of trying so many things that haven't worked.  Hopefully this will be the answer for me.  

 

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I'm sorry to hear you are unwell, but welcome to the board.

 

If you think you could have celiac disease, and think you would like a formal diagnosis (it's a helpful incentive for sticking to the gluten-free diet for many) you should resume eating gluten and get tested very soon. Eating gluten-free will cause all celiac tests to eventually show up as (false) negative. Any family doctor can order the blood tests. The most common are: 

  • DGP IgA and DGP IgG
  • ttg IgA and ttg IgG
  • EMA IgA
  • total serum IgA
  • AGA IgA and AGA IgG (older tests)

 

Going off gluten for a few days can affect some people's test results, and many find that consuming gluten after being gluten-free for a good length of time makes them horrifically sick, so if you want to have the blood tests done, now is a good time.

 

If you decide to skip the testing, and a few do, best of luck with the gluten-free diet. I hope it works well for you.

 

And I'm not totally staying on topic but....I was wondering if your hypothyroidism is managed well. Is your TSH near a 1? Are your free T4 and free T3's in the upper 1/2 to 3/4 of your lab's normal reference range? As you know, hypothyroidism can really slow your metabolism and mess with digestion (but it usually causes "C" and not "D"), and it has many of the same symptoms as celiac disease... could be something to recheck.

 

I have ITP, a type of thrombocytopenia, so when I saw you mention red dots on your arms, little warning bells went off in my head. That is how petichiae which are tiny little "bleeds" under your skin. Patients with low platelet counts end up with those because they are not clotting properly; they are also often anemic. try googling it and see if it fits you, and if so you should have your platelets checked... It's fairly rare but I thought I'd mention it.

 

Best wishes.

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 Thanks for the response.   I didn't realize that hypothyroidism present with a lot of the same symptoms as celiac or gluten-intolerance.   

 

Actually my hypothyroidism hasn't been managed very well.  It was for a while and I was actually feeling pretty good but then they changed the formulation of Armor Thyroid and I started to not feel right on it.  I was very, very irritable on it.  Another one of my symptoms is sensitivity to medications.  I've also had some issues with and SVT, which I think may have been from having my thyroid meds too high.  I used to try keeping my TSH under 1.   My old doctor wouldn't measure my free T3 at all but this new PA I'm seeing is willing to do that.  The problem with her is that she is threatening to take me off of the Thyroid USP that I presently take along with Synthroid if we don't get my levels stabilized.  

 

I haven't been good enough about working to get my levels stable since it's sometimes such an effort to go to the doctors and to have the blood work done.   

 

Thanks also for the info on the thrombocytopenia.  I will check that out but I think my platelets have been in the normal range.  I think that they test those when I get my cbc.  I'll have to check my records.  I keep copies of all of my blood work in a binder.  

 

I guess I'm confused about the testing for celiac disease.   I thought that you have to have the blood test and also the biopsy.  I don't think I'm wiling to do a biopsy but I would be fine with doing the blood test.  I just don't know when I would be able to get to see my PA and would thus have to put off trying to see if this helps me or not.  

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I thought that you have to have the blood test and also the biopsy.  I don't think I'm wiling to do a biopsy but I would be fine with doing the blood test. 

 

You are going to be wishing you had that blood test panel for celiac, later, so why don't you take that list and get it done now ? Very simple, they just take a blood draw.  Typically, they won't do a biopsy without the positive blood results, so you won't be obligated further unless you have symptoms... oh, wait, you DO have symptoms, what are you waiting for ?   If you go on a gluten free diet, and you really do have a gluten problem such as intolerance or celiac, your thyroid meds are very likely going to need further adjusting, anyway.  But you would then get your levels under control much more easily.   Did you know that some medications are not gluten free, including some thyroid meds ? :ph34r:  :angry:    So you will need to check with the pharmaceutical manufacturer to be sure to get the proper type. 

 

The tests for this are not painful, believe me, there are LOTS of other medical procedures that are much worse than this.  

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It's fairly unusual to take synthroid along with natural dessicated thyroid; I've read many poeple do not do well with that for some reason. Perhaps the NDT is causing a problem for you. Have you considered trying a synthetic T3 like Cytomel instead?  Not all meds work right for all people, and maybe you need to try something new.

 

From what i undestand, people taking NDT, like Armour, will usually have a supressed TSH well below a 1, and closer to a 0. I think dosing is then done on Free T4 and Free T3 and symptoms... but I have not yet had the chance to try NDT so I can't speak from personal experience, just what I have witnessed/interpreted from others discussing it.

 

I hear you about treating hypothyroidism being a pain! I can't believe how slow the process is. Takala is right, you should keep a closer eye on your meds as you heal; you might need less as time goes on.

 

As for celiac tests, doctors usually start with blood work and then move onto the biopsy. Not all doctors require a biopsy for a diagnosis but most still do. The exception seems to be when you have mulptiple positive blood tests, especially if one is a positive EMA IgA (only shows up when there is lots of damage to your gut).

 

I did not have a biopsy but I had very textbook symptoms and had two positive tests (including an EMA). I did not feel the need for the biopsy. I think the biopsy is a good thing for people whose tests do not clearly indicate celiac but celiac is still suspected, when people need to check (internally) if there is any other cause besides celiac, or for people who could waver on the gluten-free diet without a firm diagnosis.

 

I would go ahead with the blood tests first, and then consider whether the biopsy is needed after seeing your results and talking with a doctor. Many, if not most, people around here have had a biopsy and there were very few who had any sort of problem with it... I gues what I would say is not to discount it too soon as it could be a help to you.

 

Best wishes.  :)

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I didn't know that some of the thyroid meds have gluten although it seems that Synthroid has sugar in them.  I'll keep that in mind.

 

When I was on Synthroid only, I didn't do as well and felt much better when we added the Armour (NDT) so I don't think I would try going without that at this point.  I recently found an article on how most doctors don't know that NDT should be prescribed twice a day (breakfast and dinner) rather than once.  I guess prescribing it twice a day eliminates the problem I had of my t4 being too low with just the NDT while my t3 was in a good range.  That's why we added the Synthroid based on my  labs.  

 

I now plan to find someone who will work with me and do the 2x a day thing and hopefully I can get off the Synthroid completely.  It's quite expensive anyhow.  I would not be without NDT though.  I have seen such an improvement on it in the past and after trying going back to just Synthroid, I noticed I never felt THAT good on it.  

 

Regarding the diagnosis, I'll keep that in mind but since I've been trying to go gluten-free for the past week for over a week now I know that the test results would be affected so I may just wait and see what happens and then if I go back to gluten, I'll decide what to do at that point.  I wish I would have thought to get tested the last time I went to my PA.

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    • You're welcome! Yes, I too, hate waiting for lab results. Ugh!
    • I understand this is not a doctor's office and that I need proper testing done to rule out Celiac disease, however, I am stuck waiting until November to even see a GI doctor. So I need some suggestions soon on which test to go for first and what to do as I wait. Also do note, I am 28 years old.

      Right now, the most suspecting culprits to my symptoms have been Gallbadder, Celiac disease, and IBS. I have also been recently diagnosed with pre-diabetes and I am obese.  My Ultrasound and CT scan have all come up as normal and no signs of gallstones. However, I was in extreme pain as my upper abdomen was examined during the ultra sound. My white blood cell count also seems to be high at 12,000 but all blood work came back normal for liver and everything else.

      Symptoms included are: diarrhea
      yellow-stools (Sometimes foul smelling but always sink)
      light gnawing pain in area a few inches above belly button
      burning in chest
      sometimes pain below upper right rib cage.
      Tenderness all around the upper abdomen, but more so on the right and center.
      burping frequently after meals
      Gassy
      bloating in abdomen The pains used to come and go for the past few years as something very mild, but then the yellow stools happen at least four months ago and at a constant rate. Everyday it is either yellow or orange.  Sometimes the stools are lose and other times they are not. Two months in, I was finally diagnosed with pre-diabetes and have been having a strict low calorie and non fatty diet.

      So far the upper right pain has subsided but the pain above my belly button would continue. The gassy and bloated feeling would come and go as well. I get severe heart burn after almost every meal. But I felt it especially after eating whole wheat sandwiches or whole wheat pasta. I however don't feel it when I eat a Nature Valley granola bar, or pack of peanut butter crackers. I also had a chicken and vegetable stir fry with soy sauce cooked in that also had little effect on me. A bowl of cereal also made the heart burn act up pretty bad. I sometimes feel numb or light headed after various meals. Especially larger ones. In fact, it seems the more I eat, the worse I feel. But the less in the stomach, the more the pain above my belly button starts to act up.

      It is usually in the morning and afternoon I feel the most with gas and bloating. Especially after any large meals from the previous day. Despite the diet and work outs I have had, nothing has changed the stools. However, taking fish oil pills has greatly reduced the pain in my upper abdomen as well as the pain  in the the area above my belly button. My question now is, is there a very likely chance of this being celiac disease? Should I go on a gluten free diet to test since I Have to wait so long? Also, which test should I ask the doctor for first, as it will take a GREAT deal of time to pay off each one. Colonoscopy, HIDA scan, or endoscopy. 

      Again, I understand this isn't a site to get compete medical advice or to know exactly what my illness is, but I am trying to narrow down the possibility or what is most likely. If this has a chance of being celiac disease, I would rather know sooner than later.
    • Thank you very much for all the info Squirmingitch. The doctor told me as we were talking he was going to order some tests with urine so I don't know why he didn't mark that. Maybe he forgot as we were talking? Duly noted about the bladder Cancer to watch out for too. Doctor said it will take about a week to get the lab results back usually from this lab. The wait will seem like forever I'm sure. Yes I will press to have the other tests done too if this one comes back negative.
    • http://www.cureceliacdisease.org/screening/ Was your hubs tested for total IgA to see if he's IgA deficient? Read this thread: http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/83660
    • Yes, bone density problems are all part of the celiac "umbrella" so to speak and yes, osteoporosis tends to happen more rapidly and at earlier ages than normal when malabsorption is happening. At age 43, it's not normal to have osteoporosis as you describe so that's another part of the jigsaw puzzle. Time to receive blood test results back from the doc are entirely dependent on the particular lab they were sent to. Yep, it's time for you to start keeping a very close check on the PSA in light of your father having had prostrate cancer. I would think you should get a PSA every year. I really would have liked to see him do a urinalysis. With the prostrate cancer your father had, it would seem a close watch should be kept on you for bladder cancer as well. The first symptom of that is blood in the urine but it's generally microscopic before you're ever able to actually see it. That happens to be the 8th most common cancer in men & it's moving up in the rankings. I know this because my hubs had it. The good news is that it's also one of the easiest and most successfully treated provided it's caught early. Certainly starting @ age 50, men should see a urologist every year. BTW, in the last year before I found out I was celiac, I turned up with microscopic blood in my urine. I got it checked out thoroughly since I know about bladder cancer & all tests, ultrasounds, cystoscopy, CT scan etc... turned out fine. The docs were stumped & finally said, "apparently that's just what your body does". Guess what? That's not "just" what MY body does. Once I went gluten-free, I have had no more microscopic blood in my urine. Interesting eh? Before now I didn't realize you are in Canada. The doc didn't do the full celiac panel but I understand the initial screening protocols in Canada only order the TTG but if that comes back negative be sure & press for the full panel as cyclinglady said. We have several here who tested like cyclinglady so it's not a rare thing, it's just not the norm. I'm glad he's doing the B-12 & Ferritin -- those can be big clues.
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