Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Could This Be Celiac?

Anna'smom

Recommended Posts

Anna'smom Newbie
Anna'smom
Posted

I am very worried about my husband. About 2 1/2 years ago he was diagnosed with Waldenstrom's (Non-Hodgkins Lymphoma) while being tested for the cause of body bone/joint pain. Instead of finding the answer to his body pain, he ended up with the cancer diagnosis. In addition to the body pain, he started having severe pain and numbness in his left foot. He said it feels as if a semi truck ran over his foot; he also feels like someone tightened a rubber band around his toes to the point of them wanting to pop off. The oncologist has not been able to find a cause for this; he does not feel that this or his recent diagnosis of osteopenia has anything to do with the cancer.

In the last few months, his right foot became affected, as well. Now his right foot is as bad as his left foot. He has also noticed numbness going up to his knees and periodic numbness/tingling in this hands. Yesterday, his hands turned white briefly while being outside in the cold. He is now cold all of the time, feeling as if he's standing on a block of ice. He has a difficult time getting warm. He has been piling on the blankets at night, but then breaks out in night sweats. I do know that the night sweats can be due to the cancer.

He does not have to do anything for the cancer at this time. The doctors check his blood levels every six months; they say they do not need to do any treatments unless he either gets his Igm number to a certain point, or he becomes symptomatic. He will see the doctor in a couple of days to discuss what is going on. My hubby did start a Vegan diet about six months ago after reading the China Study. His Igm number did miraculously go down significantly three months after the diet change. The last two tests, however, went back up to where they originally were. The doctors think that the low test was a false one. I don't know what to think. I'm just sooo incredibly worried about him. Keep in mind he is only 48. My in-laws have suspected Celiac all along; the test came back negative, but I know that false negatives are very common.

What do you think???? Does his profile of symptoms sound like they could be attributed to Celiac disease? I'm sorry for rambling on, I just want to get him help. He's in a lot of pain (though he is incredibly strong and optimistic). Thank you so much for any help!!!

Laura :(

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Sailing Girl Apprentice
Sailing Girl
Posted

Hi Laura,

I don't know whether it's Celiac. But the symptoms you mention -- joint pain, numbness/tingling in extremities (due to nerve damage), and osteopenia are common in Celiacs. Celiacs also are at far greater risk for lymphoma than the general population.

You're right -- false negatives are extremely common on both the blood tests and the biopsy for Celiac. I'm curious -- you say your inlaws have suspected Celiac all along. Does it run in his family? If so, I'd say there's a good chance he has it too. Many of us don't get gastrointestinal symptoms until other body systems have been damaged considerably.

Have you/he considered giving a gluten-free diet a trial? You should complete any medical testing you wish to have done before going gluten-free, but there's no reason not to try the diet.

Nerve damage like your husband has could take a while to clear, but he'd likely notice some difference fairly quickly if gluten is the problem. A friend of mine with neuropathy in both his feet tried gluten-free for a week (on my advice) and noticed that the neuropathy improved. (He unfortunately went back on gluten -- he didn't want to give up his beer, and his doctor said there was no connection, so he felt validated in making that decision. His neuropathy got significantly worse after that).

I hope you find some answers. But there's no reason not to try the diet, even if his testing for Celiac is negative. You may find your answer in the diet rather than in medical testing.

Sailing Girl

ang1e0251 Contributor
ang1e0251
Posted

Yesterday, his hands turned white briefly while being outside in the cold. He is now cold all of the time, feeling as if he's standing on a block of ice.

This part sounds like Raynaud's. I was just reading on the NIH sight about it. Type it into your search and many sources will come up.

I agree that going on the gluten-free diet might prove beneficial. It can't hurt either of you and he may find some relief in it.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,983
    • Most Online (within 30 mins)
      7,748
    CRae
    Newest Member
    CRae
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Wheatwacked
      Outgrow celiac?

      By Wheatwacked · Posted

      @Riley., Welcome to the forum.   It was once believed that Celiac Disease was only a childhood disease and it can be outgrown.  That was before 1951, before gluten was discovered to be cause of Celiac Disease, also called Infantilism.  Back then Cileac Disease was thought to be only a gastro intestinal disease, once you  "outgrew" the colicky phase, you were cured. You were so lucky to be diagnosed at 5 years old so your developing years were normal.  Gluten can affect multiple systems.  The nervous system, your intellegence. The muscules, skeleton. It can cause neurological issues like brain fog, anxiety, and peripheral neuropathy.  It can cause joint pain, muscle weakness, and skin rashes. Epilepsy is 1.8 times more prevalent in patients with celiac disease, compared to the general population. Because through malabsorption and food avoidances, it causes vitamin D and numerouus other essential nutrient deficiencies, it allows allergies, infections, poor growth, stuffy sinuses and eustacian tubes. There is even a catagory of celiac disease called "Silent Celiac".  Any symptoms are explained away as this, that or the other thing. Gluten is one of the most addictive substances we consume.  Activating the Opiod receptors in our cells, it can numb us to the damage that it, and other foods are causing.  It has become socially acceptable to eat foods that make us feel sick.  "There's a pill for that".   It is generally accepted that n fact you are weird if you don't. The hardest part is that if you don't eat gluten you will feel great and think why not.  But slowly it will effect you, you'll be diagnosed with real diseases that you don't have. You'll be more susseptable to other autoimmune diseases.  As you read through the posts here, notice how many are finally dianosed, after years of suffering at older ages.  Is it worth it? I think not. Perhaps this book will help:  Here is a list of possible symptoms:   
    • Riley.
      Outgrow celiac?

      By Riley. · Posted

      Hi! Im Riley, 18 years old and have been diagnosed for 13 years.. the testing started bc I stopped growing and didn’t gain any weight and was really small and thin for my age.  I got diagnosed when I was 5 and have been living gluten free since, in elementary and middle school it was hard for me and I kept contaminating myself bc I wanted to fit in with my friends so so badly. I ate gluten secretly at school and mostly regretted it 30 minutes later.  I’ve had symptoms like diarrhea, nausea, headaches, stomachaches, threw up a lot and was really emotional.  In 2022 I really started working on myself and tried to stay gluten free and if I did eat gluten I wouldn’t tell anyone and suffer in silence.  Last year in July I begged my mom to let me „cheat“ one day bc I just wanted to fit in… I ate a lot of different stuff, all the stuff I missed out on in my childhood like nuggets, pizza and all that.. I didn’t have symptoms that day and was doing really fine My mom and I wanted to test how far we can go and said we would test it for 12 weeks to get my blood taken after to see if I’m doing good or if symptoms start showing  As a now 18 year old girl who finally gained a normal weight and doesn’t get symptoms I’m to scared to get tested/my blood taken cuz I finally found comfort in food and it got so much easier for me and my family.  A year and 4 months later i still didn’t get any symptoms and have been eating gluten daily.  I’m scared to get tested/my blood taken cuz what if I’m actually not fine and have to go back to eating gluten free. Any tips to get over that fear and „suck it up“ cuz I know I could seriously damage my body… sorry if I seem like a idiot here… just don’t really know what to do :,)
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      There is much helpful 'truth' posted on this forum. Truths about Celiac Disease are based on scientific research and people's experience. Celiac disease is inherited. There are 2 main Celiac 'genes' but they are variations of one gene called HLa - DQ What is inherited when a person inherits one or both of the DQ2 or the DQ8 is a predisposition to develop celiac disease after exposure to a environmental trigger. These 2 versions of the DQ gene are useful in diagnosing  celiac disease but there are about 25 other genes that are known to influence celiac disease so this food intolerance is a multigenic autoimmune disease. So with so many genes involved and each person inheriting a different array of these other genes one person's symptoms may be different than another's symptoms.  so many of these other genes.  I don't think that much research on these other genes as yet. So first I wrote something that seem to tie together celiac disease and migraines.  Then you posted that you had migraines and since you went gluten free they only come back when you are glutened. Then Scott showed an article that reported no connection between migraines and celiac disease, Then Trents wrote that it was possible that celiacs had more migraines  and some believed there was a causal effect. You are each telling the truth as you know it or experienced it.   
    • tiffanygosci
      Aldi Pueblo Lindo Yellow Corn Tortillas

      By tiffanygosci · Posted

      Another annoying thing about trying to figure this Celiac life out is reading all of the labels and considering every choice. I shop at Aldi every week and have been for years. I was just officially diagnosed Celiac a couple weeks ago this October after my endoscopy. I've been encouraged by my local Aldi in that they have a lot of gluten free products and clearly labeled foods. I usually buy Milagro corn tortillas because they are cheap and are certified. However, I bought a package of Aldi's Pueblo Lindo Yellow Corn Tortillas without looking too closely (I was assuming they were fine... assuming never gets us anywhere good lol) it doesn't list any wheat products and doesn't say it was processed in a facility with wheat. It has a label that it's lactose free (hello, what?? When has dairy ever been in a tortilla?) Just, ugh. If they can add that label then why can't they just say something is gluten free or not? I did eat some of the tortillas and didn't notice any symptoms but I'm just not sure if it's safe. So I'll probably have to let my family eat them and stick with Milagro. There is way too much uncertainty with this but I guess you just have to stick with the clearly labeled products? I am still learning!
    • tiffanygosci
      New Celiac Mama in My 30s

      By tiffanygosci · Posted

      Thank you all for sharing your experiences! And I am very thankful for that Thanksgiving article, Scott! I will look into it more as I plan my little dinner to bring with on the Holiday I'm also glad a lot of research has been done for Celiac. There's still a lot to learn and discover. And everyone has different symptoms. For me, I get a bad headache right away after eating gluten. Reoccurring migraines and visual disturbances were actually what got my PCP to order a Celiac Panel. I'm glad he did! I feel like when the inflammation hits my body it targets my head, gut, and lower back. I'm still figuring things out but that's what I've noticed after eating gluten! I have been eating gluten-free for almost two months now and haven't had such severe symptoms. I ate a couple accidents along the way but I'm doing a lot better
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.